Was Going gluten-free a Mistake? Request for Advice and Cautionary Tale

[GlutenFreeRegerts]

 

Hello, and thank you for your interest. I've never seemed to really have the time for forums, but I'm giving it a try for two reasons: first, perhaps someday it will inform someone asymptomatic considering going gluten-free that, maybe, there could be risks, and second, because I have no idea what's going on anymore, haven't found any similar cases online, and am hoping for some advice from people with greater experience.

The following is a product of my memory and a number of notes I took regarding my symptoms once things started getting bad. Henceforth, I shall reserve the term ‘pain’ to refer to ‘sharp pain’, which I define as discomfort that appears to affect my breathing (i.e. gasping, holding, unsteady, etc.). I shall use the term ‘ache’ to refer to ‘dull pain’, which I define as discomfort that does not encourage any changes to my breathing (excluding the expression of discomfort, i.e., moans, cries, expletives, etc.). I will put numbers [#] or intervals [#-#’] following a symptom to provide a measure for the intensity of discomfort out of 10 caused by the symptom.

I apologize in advance for the length; it is a long story, so hearken here and gather 'round all ye ready for a tale…

-------------------------------------------------------

First, some basic personal info: I'm a 29-year-old, ~165 lbs. male in grad school with no marks of malnutrition I know of (strong teeth, healthy weight, intelligent, etc.), and (before all this started at least) no known allergies or autoimmune problems of any kind (though my father has psoriasis). I have never shown signs of hypochondria, and, if I’m honest, have usually required prodding to consider going to the emergency room (ER) or doctor. Recently, I have started to suspect in hindsight that I may have had some mild, lifelong constipation. Finally, I was diagnosed with obsessive compulsive disorder (OCD) when I was 12 and have taken fluoxetine (SSRI, anti-depressant) since, though have still dealt with compulsions daily. It is a constant struggle, for which I’ve done behavioral therapy, and engage in at least 30 minutes of mindfulness meditation daily as well. While attending college I was diagnosed with adult ADHD and prescribed Vyvanse, which I’ve taken daily for ~8 years now.

Roughly 4 years ago (Summer 2015) a relative of mine was diagnosed with Celiac Disease (celiac disease). While I had no symptoms (asymptomatic), I got a blood test and was found to be borderline, so my doctor suggested that I start a gluten-free (gluten-free) diet. While not terribly pleased by losing glutenous foods, the neurological connections to celiac disease made me think my OCD might improve. After all, even if it didn’t seem to help, everything I read seemed to suggest I could always just go back to eating gluten again. Thus,  in January 2016 I switched to a diet of mostly potato patties, fruit, and celery in the morning and a mix of rice, beans, broccoli, cheese, and a little chopped meat for lunch and dinner. I initially lost a little weight (5-10 lbs), but returned to my normal weight within a few months once I got the hang of it. I was a little depressed at first by the loss of glutenous food, but tried to remain positive.

However, after a while gluten-free, I noticed a very mild but slowly worsening gut ache [1-3]. Further, while I had been drinking milk religiously my entire life, I found it now made my stomach ache [2-3] after going gluten-free (it is noteworthy that I did not appear to have a similar issue with cheese, suggesting Casein's the problem?). Being extremely stubborn and feeling gluten had already restricted my diet enough, I refused to give up milk for another 3 months, but finally gave in as the discomfort worsened [3-4]. I also began noticing the development of other disconcerting issues, including mild fatigue [2] and a painful red rash [4] on my neck that appeared when stressed (mostly in cases of lack of sleep).

Worried by these developments, I looked up more info online and found out how I really should have gotten an endoscopy+biopsy before going gluten-free. I asked my doctor, got directed to a gastrointestinal (GI) specialist, scheduled an endoscopy for ~3 months down the road (March 2017), and started eating gluten again.

This is where things start getting weird: I found that upon eating gluten again, the gut ache vanished, and I could drink milk again. I had already gotten hints of this impression from a couple instances of likely gluten contamination, but this seemed to confirm it. While the endoscopy report suggested nothing looked amiss visually, the biopsy showed some villus atrophy suggestive of (among admittedly a few other things) celiac disease, and my GI doctor made the diagnosis of celiac disease (Summer 2017).

Still concerned with the constant, worsening gut ache and the discomfort from drinking milk (both of which returned upon resuming a gluten-free diet), I continued to see the GI specialist, who scheduled a Lactose breath test. This came back negative. By the time I saw my GI specialist again it had been another 6 months gluten-free (scheduling both appointments and testing involve ~2.5-3 month wait times), and by then the ache had returned and worsened [3-6]. He recommended a hydrogen breath test, but due to an internal error, this didn't get scheduled correctly. I did not make too much of a fuss, since, if I'm completely honest, I had not been much impressed by the usefulness of the Lactose test, and all these tests were getting expensive for a grad student. Moreover, by the time I found out, the ache had grown severe enough that I had started intentionally eating gluten periodically, as it appeared to sort of 'reset' the growing gut ache, and was finding it a workable, if temporary, solution (~March to June 2018). In general, I also remember (throughout but especially around this time) not being able to shake the feeling that I was somehow hurting myself with the gluten-free diet, but suspicious of my desire for glutenous food and with the same encouragement from others, I ignored the feeling.

Now, starting in May 2018 I had also started taking an herbal supplement encouraging good circulation for an unrelated, lifelong health issue. While this originally seemed fine, beginning around July 4th I started to feel dizzy [2], sweaty [1], and having pain in my chest (heart) [0-5], lower-left abdomen [0-5], upper-left abdomen [0-2], and a vertical pressure [2-5] slighly left of the middle of my abdomen (right where my aorta should be). This came to a head July 7th, when one night it got so bad [7-8] that I couldn't sleep, kept hyperventilating (which I repeatedly calmed using breathing techniques learned in behavioral therapy), and felt 2 'tearing' pains [4] in quick succession in my chest (just left of sternum, near 4th rib) followed by an immediate decrease of the (aorta?) pressure I’d been feeling.

Finally realizing the supplement might be behind it, I stopped taking it the next day. Most of the symptoms subsequently went away, save for an ache in my chest [2-4], pain in my lower-left abdomen [2-3], pain in my upper-left abdomen [0-2], a lump in my lower throat [2-3], and a general ‘hollow’ feeling in my left side, all of which have remained (with varying intensity) up to the present.

Since my grandfather had total heart failure at 36 and, after several instances, later died due to a genetic predisposition for a prolapsed mitral valve, I was concerned when the chest (heart) discomfort failed to go away after several days. Convinced by my friends that I probably should have gone to the ER that night, I went and got a chest x-ray, abdominal aorta ultrasound, and electro-cardiogram, none of which showed signs of trouble (July 2018). Later (January 2019), while trying to get to the bottom of all the pain I was in, I would also see a cardiologist who did an exercise stress test, a 24-hour holter monitor test, and an echo-cardiogram, none of which suggested anything untoward, and leads me to suspect my heart itself is okay despite the chronic discomfort.

Now, back to the matter at hand: after that night of cardiac distress, the next time I tried to eat gluten I had severe nausea [6-7] and vomited. A month later (August 2018) I tried to eat gluten again, and had terrible pain in my upper-left abdomen [7-8] and an intense, painful, bloating sensation just below where my ribcage meets [6]. I later did some research online and found discussions of celiac disease being 'activated' by a stressful physical event, and suspected this might explain my sudden development of symptoms. That said, I found nothing regarding cases of asymptomatic celiac disease becoming symptomatic, and nothing about going gluten-free causing bacterial overgrowth (which was my leading theory on the growing gut ache), though I did find it commonly develops in patients with celiac disease.

In any case, deprived of gluten, I lost the defense I'd been using against the growing gut ache. Eventually the ache became debilitating [5-6], and was accompanied by significant gas (~30-40 instances of flatus daily), increased burping, discomfort for around ~2 hours after eating [2-6], worsening of the lump in my throat [0-5], increased bowel movement urgency, occasional mucus in stool, irregularity in bowel movements, and intense fatigue [4-6]. Fortunately, this peak in symptoms occurred right around my next GI appointment (October 2018), where, considering the apparent severity and symptoms, the doctor decided to prescribe antibiotics for Small Intestinal Bacterial Overgrowth (SIBO) despite not having results from a breath test.

Shortly after taking the antibiotic, I began to feel much, much better; the growing gut ache and gas largely disappeared, though notably the off-and-on pain in my lower- and upper-left abdomen and the ache in my chest (heart) remained. The lump in my lower throat also returned off and on [0-2], as did the gut ache gradually over time, which now generally included a sore tenderness throughout my belly [1-2].

Free of the crippling gut ache, I turned my efforts to sorting out the remaining fatigue and discomfort. I got a thyroid panel (November 2018), where I had mildly high levels of TSH (~6.4 to 7.4) in 2 consecutive thyroid blood tests six weeks apart (which could explain the lump in my throat), though thyroid antibodies returned negative and T3 & T4 levels remained normal. Hoping to avoid a recurrence of SIBO, I also tried several shifts towards a low FODMAP diet consisting mostly of salad, sweet potatoes, plain white chicken, fish, and a big mug of bone broth (with quality gelatin added in for good measure) every day (by this time, I had switched to 2 meals a day to minimize time spent incapacitated after eating). Nevertheless, by February 2019 the SIBO was back [5-6], and I had to request another round of antibiotics, which left my gut feeling even sorer than the last time. The continuing fatigue [4] left me tired all the time, and the lump in my throat began to be accompanied by an occasional ache extending down into my upper torso slightly [4].

Over a month after stopping the 2nd round of antibiotics (April 2019) I was finally able to get the Hydrogen breath test, and while I felt a rise in discomfort after drinking the glucose [from 2 up to 5], the test came back negative. However, my GI doctor suggested the tests aren't all that reliable and the effectiveness of the antibiotics is strong evidence.

In this time (around January 2019 and on), I should also mention the chest (heart) ache had begun to mildly spread into my left shoulder [1-2], arm [0-1],  and leg [1-2], as well as up the left side of my neck and head [0-1] (though to be clear, these are more worrying than intense, and other than my neck and head they seem closer to muscular aches). Perhaps related to the former, during a visit home my family pointed out that the way I walk has changed: my left heel turns inward, enough that it has warped the shape of my shoes over time. Over the winter (Jan.-April 2019), I also noticed my left leg seemed to get colder faster than my right, and whenever I exercise the muscles of both my left leg and left arm appear to tire faster. I occasionally have mild headaches [1-3] in the left side of my head, which while I found initially disconcerting, is evidently not terribly uncommon in people.

Meanwhile, having been monitoring my TSH (which was up to ~9.4 by March 2019, but still negative on thyroid anti-bodies), I was prescribed a low-dose (25 mcg) of Levo-Thyroxine for the Hypothyroidism I was mysteriously developing. Unfortunately, I found the new medicine not only made my stomach hurt [3-4], but also didn't much alleviate the fatigue or lump in my throat, and appeared to make the chest (heart) discomfort worse [3-5]. Fearing Hashimoto's or other autoimmune disease commonly paired with celiac disease, I got a thyroid ultrasound (March 2018), but it returned unremarkable. My next doctor visit 6 weeks later showed a TSH of 8.9, so my doctor increased the Levo-Thyroxine dosage (50 mcg), though could offer no comment regarding the chest (heart) discomfort it seemed to exacerbate. Before I started taking the increased dosage however, my GI doctor suggested I hold off on taking anymore Levo-Thyroxine to see where I stand in TSH without the medicine, which I've done for ~6 weeks now and will be getting checked again soon.

That largely brings us to the present, save for one last development. A few weeks ago (May 2019), I caught a stomach bug from my roommate. While mildly unpleasant for him, it was the first time I'd gotten sick with anything significant since this all started, and it felt more intense than any sickness I can recall [8-9]. Enough so that when I felt the rise in nausea that usually precedes vomiting, it was so intense I briefly blacked out and fell into the wall (something I've never experienced before). After coming to, I suddenly became drenched in sweat over a dozen seconds or so, despite lacking any noticeable fever and sitting still. Having trouble thinking clearly and worried by the fainting, I entrusted myself to my roommate, who took me to the ER where they explained I had an incidence of 'Vagus syncope' due to my Vagus nerve being overstimulated.

My particularly intense reaction to what seemed a common 24-hour stomach bug has lead me to wonder if perhaps the nerves of my gut may just have somehow become hyper-sensitive causing constant “functional pain”, which could explain why so many tests have returned negative. Then again, it could also just be the bug was particularly hard on my gut because it is already inflamed. Naturally, neither can be considered more than just speculation on my part, but I wish to make it clear this instance of sickness was very far from ordinary as far as my life experience is concerned.

That largely does it as far as history goes. My diet has relaxed to a fusion between my former gluten-free rice-based diet and the low-FODMAP (also gluten-free) diet. I regularly take Berberine, which has appeared to help keep the SIBO from recurring for at least the last 4 months. I still experience mild to severe gut discomfort after eating for around 2 hours [2-6], and thus stick to 2 meals a day. ‘Small’ (a relative term) quantities of gluten (1 cheez-it/day over 1 week in May 2019) no longer appear to cause a noticeable reaction, though I have not repeated this or any other tests involving gluten over the last several months in fear of aggravating my gut. Moreover, with the constant (but inconsistent) gut symptoms I have, I’m not sure I can confidently identify a reaction anyways. I still have trouble with milk [0-4], but try to eat at least some dairy regularly to avoid losing the ability to. The most consistent source of discomfort in the last few months is in my lower-left abdomen [2-6], followed by the upper-left abdomen [0-6] and chest (heart) [1-6], the 3 of which appear to be connected somehow. When particularly intense [>4], these sources of discomfort will also extend into my back, and in the case of the chest (heart) ache I can sort of feel where the two tearing sensations occured. On rare occasion the upper-left pain will be mirrored to my right side, though with lower intensity [0-4]. My left leg and arm still tire faster and still constantly ache a little [0-2], but beyond being disconcerting this usually remains only a very minor annoyance. I'm still terribly tired [3-6], and the lump in my throat comes and goes [0-4]. Mornings continue to be when symptoms tend to be at their worst.

-----------------------------------------------------

That should do it; if you’re still reading this, I both respect and appreciate your determination and perseverance. If I didn’t sound all that worried throughout all this, know that it is entirely an affectation; I’m pretty much terrified at this point. I’m always tired, I’m losing my handle on my OCD, my daily meditations are in shambles, and I am constantly falling behind with my work with all the time lost incapacitated after eating (enough now that I suspect I’ll need to put off graduating). Even more though, the gradual changes in my personal behavior and outlook on life deeply frighten me.

Obviously, it makes no sense (scientifically, as far as I understand it) that my problem was/is being gluten-free, and indeed, I could easily believe I shouldn’t eat gluten despite its former effectiveness at easing the growing gut ache. More, I suspect my original change in diet somehow messed up my gut biome, and  my ‘glutenings’ were re-establishing whatever was going on before. My positive response to antibiotics seems to demand my problem at least involves something to do with gut flora.

The hypothyroidism remains a complete mystery to me, seeing as the antibodies are negative.

The hollow feeling and localized pains in my left side make me think part of the problem likely involves certain organs, though how they could have been damaged after that night of apparent cardiac distress remains unknown to me. Having done more research I’m really thinking the lower left pain has to do with my sigmoid colon (I can kind of feel it when I flex for a bowel movement). My best guess would be some sort of diverticular disease, as it fits best with my other symptoms (mucus in stool, recurring SIBO, discomfort after eating, etc.). Since it hasn’t gotten better after nearly a year I think a CT scan would be justified, but my doctors seem resistant. 29 is pretty young for diverticula, but my thought is that the mild chronic constipation I’ve always had might have hastened the process. It would also be nice to just have a picture at this point to rule out things like mesenteric ischemia.

I don’t mean to complain as I clearly don’t have it as bad as some stories I’ve read, but I’m getting a little desperate for help and don’t seem to be getting anywhere with what I’ve tried so far. I’ve scheduled an appointment with a new doctor, though my current doctors are taking a lot of time to share my records. I’ve also scheduled some counseling in hopes of helping to rule out psychosomatic effects and better monitor my psyche (I’ve never really had much success with counseling in the past but I’m willing to try again at this point).

Regardless, please let me know if you have any suggestions, ideas, references to similar cases you’ve heard, or anything else you think might be useful; I’d truly appreciate it.

Edited June 7, 2019 by GlutenFreeRegerts

[kareng]

17 minutes ago, GlutenFreeRegerts said:

 

 

Hello, and thank you for your interest. I've never seemed to really have the time for forums, but I'm giving it a try for two reasons: first, perhaps someday it will inform someone asymptomatic considering going gluten-free that, maybe, there could be risks, and second, because I have no idea what's going on anymore, haven't found any similar cases online, and am hoping for some advice from people with greater experience.

The following is a product of my memory and a number of notes I took regarding my symptoms once things started getting bad. Henceforth, I shall reserve the term ‘pain’ to refer to ‘sharp pain’, which I define as discomfort that appears to affect my breathing (i.e. gasping, holding, unsteady, etc.). I shall use the term ‘ache’ to refer to ‘dull pain’, which I define as discomfort that does not encourage any changes to my breathing (excluding the expression of discomfort, i.e., moans, cries, expletives, etc.). I will put numbers [#] or intervals [#-#’] following a symptom to provide a measure for the intensity of discomfort out of 10 caused by the symptom.

I apologize in advance for the length; it is a long story, so hearken here and gather 'round all ye ready for a tale…

-------------------------------------------------------

First, some basic personal info: I'm a 29-year-old, ~165 lbs. male in grad school with no marks of malnutrition I know of (strong teeth, healthy weight, intelligent, etc.), and (before all this started at least) no known allergies or autoimmune problems of any kind (though my father has psoriasis). I have never shown signs of hypochondria, and, if I’m honest, have usually required prodding to consider going to the emergency room (ER) or doctor. Recently, I have started to suspect in hindsight that I may have had some mild, lifelong constipation. Finally, I was diagnosed with obsessive compulsive disorder (OCD) when I was 12 and have taken fluoxetine (SSRI, anti-depressant) since, though have still dealt with compulsions daily. It is a constant struggle, for which I’ve done behavioral therapy, and engage in at least 30 minutes of mindfulness meditation daily as well. While attending college I was diagnosed with adult ADHD and prescribed Vyvanse, which I’ve taken daily for ~8 years now.

Roughly 4 years ago (Summer 2015) a relative of mine was diagnosed with Celiac Disease (celiac disease). While I had no symptoms (asymptomatic), I got a blood test and was found to be borderline, so my doctor suggested that I start a gluten-free (gluten-free) diet. While not terribly pleased by losing glutenous foods, the neurological connections to celiac disease made me think my OCD might improve. After all, even if it didn’t seem to help, everything I read seemed to suggest I could always just go back to eating gluten again. Thus,  in January 2016 I switched to a diet of mostly potato patties, fruit, and celery in the morning and a mix of rice, beans, broccoli, cheese, and a little chopped meat for lunch and dinner. I initially lost a little weight (5-10 lbs), but returned to my normal weight within a few months once I got the hang of it. I was a little depressed at first by the loss of glutenous food, but tried to remain positive.

However, after a while gluten-free, I noticed a very mild but slowly worsening gut ache [1-3]. Further, while I had been drinking milk religiously my entire life, I found it now made my stomach ache [2-3] after going gluten-free (it is noteworthy that I did not appear to have a similar issue with cheese, suggesting Casein's the problem?). Being extremely stubborn and feeling gluten had already restricted my diet enough, I refused to give up milk for another 3 months, but finally gave in as the discomfort worsened [3-4]. I also began noticing the development of other disconcerting issues, including mild fatigue [2] and a painful red rash [4] on my neck that appeared when stressed (mostly in cases of lack of sleep).

Worried by these developments, I looked up more info online and found out how I really should have gotten an endoscopy+biopsy before going gluten-free. I asked my doctor, got directed to a gastrointestinal (GI) specialist, scheduled an endoscopy for ~3 months down the road (March 2017), and started eating gluten again.

This is where things start getting weird: I found that upon eating gluten again, the gut ache vanished, and I could drink milk again. I had already gotten hints of this impression from a couple instances of likely gluten contamination, but this seemed to confirm it. While the endoscopy report suggested nothing looked amiss visually, the biopsy showed some villus atrophy suggestive of (among admittedly a few other things) celiac disease, and my GI doctor made the diagnosis of celiac disease (Summer 2017).

Still concerned with the constant, worsening gut ache and the discomfort from drinking milk (both of which returned upon resuming a gluten-free diet), I continued to see the GI specialist, who scheduled a Lactose breath test. This came back negative. By the time I saw my GI specialist again it had been another 6 months gluten-free (scheduling both appointments and testing involve ~2.5-3 month wait times), and by then the ache had returned and worsened [3-6]. He recommended a hydrogen breath test, but due to an internal error, this didn't get scheduled correctly. I did not make too much of a fuss, since, if I'm completely honest, I had not been much impressed by the usefulness of the Lactose test, and all these tests were getting expensive for a grad student. Moreover, by the time I found out, the ache had grown severe enough that I had started intentionally eating gluten periodically, as it appeared to sort of 'reset' the growing gut ache, and was finding it a workable, if temporary, solution (~March to June 2018). In general, I also remember (throughout but especially around this time) not being able to shake the feeling that I was somehow hurting myself with the gluten-free diet, but suspicious of my desire for glutenous food and with the same encouragement from others, I ignored the feeling.

Now, starting in May 2018 I had also started taking an herbal supplement encouraging good circulation for an unrelated, lifelong health issue. While this originally seemed fine, beginning around July 4th I started to feel dizzy [2], sweaty [1], and having pain in my chest (heart) [0-5], lower-left abdomen [0-5], upper-left abdomen [0-2], and a vertical pressure [2-5] slighly left of the middle of my abdomen (right where my aorta should be). This came to a head July 7th, when one night it got so bad [7-8] that I couldn't sleep, kept hyperventilating (which I repeatedly calmed using breathing techniques learned in behavioral therapy), and felt 2 'tearing' pains [4] in quick succession in my chest (just left of sternum, near 4th rib) followed by an immediate decrease of the (aorta?) pressure I’d been feeling.

Finally realizing the supplement might be behind it, I stopped taking it the next day. Most of the symptoms subsequently went away, save for an ache in my chest [2-4], pain in my lower-left abdomen [2-3], pain in my upper-left abdomen [0-2], a lump in my lower throat [2-3], and a general ‘hollow’ feeling in my left side, all of which have remained (with varying intensity) up to the present.

Since my grandfather had total heart failure at 36 and, after several instances, later died due to a genetic predisposition for a prolapsed mitral valve, I was concerned when the chest (heart) discomfort failed to go away after several days. Convinced by my friends that I probably should have gone to the ER that night, I went and got a chest x-ray, abdominal aorta ultrasound, and electro-cardiogram, none of which showed signs of trouble (July 2018). Later (January 2019), while trying to get to the bottom of all the pain I was in, I would also see a cardiologist who did an exercise stress test, a 24-hour holter monitor test, and an echo-cardiogram, none of which suggested anything untoward, and leads me to suspect my heart itself is okay despite the chronic discomfort.

Now, back to the matter at hand: after that night of cardiac distress, the next time I tried to eat gluten I had severe nausea [6-7] and vomited. A month later (August 2018) I tried to eat gluten again, and had terrible pain in my upper-left abdomen [7-8] and an intense, painful, bloating sensation just below where my ribcage meets [6]. I later did some research online and found discussions of celiac disease being 'activated' by a stressful physical event, and suspected this might explain my sudden development of symptoms. That said, I found nothing regarding cases of asymptomatic celiac disease becoming symptomatic, and nothing about going gluten-free causing bacterial overgrowth (which was my leading theory on the growing gut ache), though I did find it commonly develops in patients with celiac disease.

In any case, deprived of gluten, I lost the defense I'd been using against the growing gut ache. Eventually the ache became debilitating [5-6], and was accompanied by significant gas (~30-40 instances of flatus daily), increased burping, discomfort for around ~2 hours after eating [2-6], worsening of the lump in my throat [0-5], increased bowel movement urgency, occasional mucus in stool, irregularity in bowel movements, and intense fatigue [4-6]. Fortunately, this peak in symptoms occurred right around my next GI appointment (October 2018), where, considering the apparent severity and symptoms, the doctor decided to prescribe antibiotics for Small Intestinal Bacterial Overgrowth (SIBO) despite not having results from a breath test.

Shortly after taking the antibiotic, I began to feel much, much better; the growing gut ache and gas largely disappeared, though notably the off-and-on pain in my lower- and upper-left abdomen and the ache in my chest (heart) remained. The lump in my lower throat also returned off and on [0-2], as did the gut ache gradually over time, which now generally included a sore tenderness throughout my belly [1-2].

Free of the crippling gut ache, I turned my efforts to sorting out the remaining fatigue and discomfort. I got a thyroid panel (November 2018), where I had mildly high levels of TSH (~6.4 to 7.4) in 2 consecutive thyroid blood tests six weeks apart (which could explain the lump in my throat), though thyroid antibodies returned negative and T3 & T4 levels remained normal. Hoping to avoid a recurrence of SIBO, I also tried several shifts towards a low FODMAP diet consisting mostly of salad, sweet potatoes, plain white chicken, fish, and a big mug of bone broth (with quality gelatin added in for good measure) every day (by this time, I had switched to 2 meals a day to minimize time spent incapacitated after eating). Nevertheless, by February 2019 the SIBO was back [5-6], and I had to request another round of antibiotics, which left my gut feeling even sorer than the last time. The continuing fatigue [4] left me tired all the time, and the lump in my throat began to be accompanied by an occasional ache extending down into my upper torso slightly [4].

Over a month after stopping the 2nd round of antibiotics (April 2019) I was finally able to get the Hydrogen breath test, and while I felt a rise in discomfort after drinking the glucose [from 2 up to 5], the test came back negative. However, my GI doctor suggested the tests aren't all that reliable and the effectiveness of the antibiotics is strong evidence.

In this time (around January 2019 and on), I should also mention the chest (heart) ache had begun to mildly spread into my left shoulder [1-2], arm [0-1],  and leg [1-2], as well as up the left side of my neck and head [0-1] (though to be clear, these are more worrying than intense, and other than my neck and head they seem closer to muscular aches). Perhaps related to the former, during a visit home my family pointed out that the way I walk has changed: my left heel turns inward, enough that it has warped the shape of my shoes over time. Over the winter (Jan.-April 2019), I also noticed my left leg seemed to get colder faster than my right, and whenever I exercise the muscles of both my left leg and left arm appear to tire faster. I occasionally have mild headaches [1-3] in the left side of my head, which while I found initially disconcerting, is evidently not terribly uncommon in people.

Meanwhile, having been monitoring my TSH (which was up to ~9.4 by March 2019, but still negative on thyroid anti-bodies), I was prescribed a low-dose (25 mcg) of Levo-Thyroxine for the Hypothyroidism I was mysteriously developing. Unfortunately, I found the new medicine not only made my stomach hurt [3-4], but also didn't much alleviate the fatigue or lump in my throat, and appeared to make the chest (heart) discomfort worse [3-5]. Fearing Hashimoto's or other autoimmune disease commonly paired with celiac disease, I got a thyroid ultrasound (March 2018), but it returned unremarkable. My next doctor visit 6 weeks later showed a TSH of 8.9, so my doctor increased the Levo-Thyroxine dosage (50 mcg), though could offer no comment regarding the chest (heart) discomfort it seemed to exacerbate. Before I started taking the increased dosage however, my GI doctor suggested I hold off on taking anymore Levo-Thyroxine to see where I stand in TSH without the medicine, which I've done for ~6 weeks now and will be getting checked again soon.

That largely brings us to the present, save for one last development. A few weeks ago (May 2019), I caught a stomach bug from my roommate. While mildly unpleasant for him, it was the first time I'd gotten sick with anything significant since this all started, and it felt more intense than any sickness I can recall [8-9]. Enough so that when I felt the rise in nausea that usually precedes vomiting, it was so intense I briefly blacked out and fell into the wall (something I've never experienced before). After coming to, I suddenly became drenched in sweat over a dozen seconds or so, despite lacking any noticeable fever and sitting still. Having trouble thinking clearly and worried by the fainting, I entrusted myself to my roommate, who took me to the ER where they explained I had an incidence of 'Vagus syncope' due to my Vagus nerve being overstimulated.

My particularly intense reaction to what seemed a common 24-hour stomach bug has lead me to wonder if perhaps the nerves of my gut may just have somehow become hyper-sensitive causing constant “functional pain”, which could explain why so many tests have returned negative. Then again, it could also just be the bug was particularly hard on my gut because it is already inflamed. Naturally, neither can be considered more than just speculation on my part, but I wish to make it clear this instance of sickness was very far from ordinary as far as my life experience is concerned.

That largely does it as far as history goes. My diet has relaxed to a fusion between my former gluten-free rice-based diet and the low-FODMAP (also gluten-free) diet. I regularly take Berberine, which has appeared to help keep the SIBO from recurring for at least the last 4 months. I still experience mild to severe gut discomfort after eating for around 2 hours [2-6], and thus stick to 2 meals a day. ‘Small’ (a relative term) quantities of gluten (1 cheez-it/day over 1 week in May 2019) no longer appear to cause a noticeable reaction, though I have not repeated this or any other tests involving gluten over the last several months in fear of aggravating my gut. Moreover, with the constant (but inconsistent) gut symptoms I have, I’m not sure I can confidently identify a reaction anyways. I still have trouble with milk [0-4], but try to eat at least some dairy regularly to avoid losing the ability to. The most consistent source of discomfort in the last few months is in my lower-left abdomen [2-6], followed by the upper-left abdomen [0-6] and chest (heart) [1-6], the 3 of which appear to be connected somehow. When particularly intense [>4], these sources of discomfort will also extend into my back, and in the case of the chest (heart) ache I can sort of feel where the two tearing sensations occured. On rare occasion the upper-left pain will be mirrored to my right side, though with lower intensity [0-4]. My left leg and arm still tire faster and still constantly ache a little [0-2], but beyond being disconcerting this usually remains only a very minor annoyance. I'm still terribly tired [3-6], and the lump in my throat comes and goes [0-4]. Mornings continue to be when symptoms tend to be at their worst.

-----------------------------------------------------

That should do it; if you’re still reading this, I both respect and appreciate your determination and perseverance. If I didn’t sound all that worried throughout all this, know that it is entirely an affectation; I’m pretty much terrified at this point. I’m always tired, I’m losing my handle on my OCD, my daily meditations are in shambles, and I am constantly falling behind with my work with all the time lost incapacitated after eating (enough now that I suspect I’ll need to put off graduating). Even more though, the gradual changes in my personal behavior and outlook on life deeply frighten me.

Obviously, it makes no sense (scientifically, as far as I understand it) that my problem was/is being gluten-free, and indeed, I could easily believe I shouldn’t eat gluten despite its former effectiveness at easing the growing gut ache. More, I suspect my original change in diet somehow messed up my gut biome, and  my ‘glutenings’ were re-establishing whatever was going on before. My positive response to antibiotics seems to demand my problem at least involves something to do with gut flora.

The hypothyroidism remains a complete mystery to me, seeing as the antibodies are negative.

The hollow feeling and localized pains in my left side make me think part of the problem likely involves certain organs, though how they could have been damaged after that night of apparent cardiac distress remains unknown to me. Having done more research I’m really thinking the lower left pain has to do with my sigmoid colon (I can kind of feel it when I flex for a bowel movement). My best guess would be some sort of diverticular disease, as it fits best with my other symptoms (mucus in stool, recurring SIBO, discomfort after eating, etc.). Since it hasn’t gotten better after nearly a year I think a CT scan would be justified, but my doctors seem resistant. 29 is pretty young for diverticula, but my thought is that the mild chronic constipation I’ve always had might have hastened the process. It would also be nice to just have a picture at this point to rule out things like mesenteric ischemia.

I don’t mean to complain as I clearly don’t have it as bad as some stories I’ve read, but I’m getting a little desperate for help and don’t seem to be getting anywhere with what I’ve tried so far. I’ve scheduled an appointment with a new doctor, though my current doctors are taking a lot of time to share my records. I’ve also scheduled some counseling in hopes of helping to rule out psychosomatic effects and better monitor my psyche (I’ve never really had much success with counseling in the past but I’m willing to try again at this point).

Regardless, please let me know if you have any suggestions, ideas, references to similar cases you’ve heard, or anything else you think might be useful; I’d truly appreciate it.

I’m sorry- can you summarize ( in 3 -5 sentences if you ever were tested for Celiac while eating a gluten diet and the result.  Then what is the question you want to ask?  

[cyclinglady]

Let me get this straight.  You have celiac disease based on biopsies (villi damage).  You also have issues with milk products.  Normally, celiac disease is linked to lactose intolerance due to the destruction of villi tips which releases the enzymes to digest lactose.  This can heal if you are not genetically predisposed to lactose intolerance which affects a huge chunk of the world’s population.  You also can have an actual milk allergy.  Have you had allergy testing by a board certified allergist?  

Going on to continued GI issues and passing out.  Have you ever heard of Mast Cell Activation Syndrome?  This condition can be horribly severe or just a nuisance.  Most doctors are not aware of it, but eventually it is becoming more mainstream.  

Like celiac disease, antibodies may not be present in autoimmune thyroiditis. Are you making antibodies in general (e.g. Immunoglobulin A, G, M, E)?  

I think that you should make sure you are really gluten free first.  Do you ever eat out?  If so, stop!  Then ditch the dairy (just temporarily).    Consider the Fasano diet (very strict gluten-free) or the Autoimmune Paleo diet being sure to avoid dairy.  

Know that it can take up to a year or longer to really heal from celiac disease.  Know that some people, like me, never had GI issues.  I had to trust my biopsies and the advice my GI gave me to go gluten free.  Oddly though I developed GI issues after my diagnosis, if I had any accidental gluten exposures.  

Heal from celiac disease and your other issues may resolve.  Really.  

[kareng]

8 minutes ago, cyclinglady said:

Let me get this straight.  You have celiac disease based on biopsies (villi damage).  You also have issues with milk products.  Normally, celiac disease is linked to lactose intolerance due to the destruction of villi tips which releases the enzymes to digest lactose.  This can heal if you are not genetically predisposed to lactose intolerance which affects a huge chunk of the world’s population.  You also can have an actual milk allergy.  Have you had allergy testing by a board certified allergist?  

Going on to continued GI issues and passing out.  Have you ever heard of Mast Cell Activation Syndrome?  This condition can be horribly severe or just a nuisance.  Most doctors are not aware of it, but eventually it is becoming more mainstream.  

Like celiac disease, antibodies may not be present in autoimmune thyroiditis. Are you making antibodies in general (e.g. Immunoglobulin A, G, M, E)?  

I think that you should make sure you are really gluten free first.  Do you ever eat out?  If so, stop!  Then ditch the dairy (just temporarily).    Consider the Fasano diet (very strict gluten-free) or the Autoimmune Paleo diet being sure to avoid dairy.  

Know that it can take up to a year or longer to really heal from celiac disease.  Know that some people, like me, never had GI issues.  I had to trust my biopsies and the advice my GI gave me to go gluten free.  Oddly though I developed GI issues after my diagnosis, if I had any accidental gluten exposures.  

Heal from celiac disease and your other issues may resolve.  Really.  

I couldn't follow that.  I wasn't sure if he had positive biopsies , when he was eating gluten-free, etc.  

What she said!  I agree and would say the same thing.

And it is possible to have other issues along with Celiac.  As for gut pain on a gluten-free diet - often people drastically change their diet   - it can be hard on the gut.  You could be getting a lot more fiber or a lot less, more sugar, more fats, etc.  Try and balance out what you eat.  

[Ennis-TX]

So celiac confirmed...read the newbie 101 section, stop eating out, and make sure your food prep area is safe and gluten free.
Dairy issues....I started with lactose intolerance over a decade ago, I ignored it like most, then celiac diagnosis, then I got a whey allergy. I dropped real dairy but I eat vegan cheeses daily, and almond and cashew milks. I can give you a long reviews on different ones.
https://www.celiac.com/forums/topic/91878-newbie-info-101/
Constant SIBO issues, try a paleo based diet with keto macros, no carbs starve the suckers and change your bodies gears to to run on fat and protein not carbs (sorta normal for humans, our ancestors did during winters when no fruit, sugars, carbs were available) I have recipes on my blog here and I can give you a few sites with tons or recipes. I been doing it for awhile to manage my UC and later blood sugar issues.

Keep a food diary it is very common for those with celiac to develop other food issues, your constant gluten exposures...your body might have flagged other foods during the times and with a damaged gut food proteins are more likely to trigger immune responses and cause allergies or sensitivities. A elimination diet to find issues is advised.
https://www.wikihow.com/Keep-a-Food-Diary
https://www.mindbodygreen.com/articles/are-food-sensitivities-for-life
If you keep having digestion issues I might also suggest enzymes taken in ratios to what you eat to ensure your breaking down foods and digesting them.

This disease can cause many other issues, sometimes the intestines are not the only thing attacked during a exposure, I had gluten ataxia and it went after my nervous system and brain.  There are often worsening symptoms to later exposures to gluten especially after going gluten free and often other Auto Immune issues can be triggered. Strict gluten free diet is the only treatment and a preventive measure for other issues.

 

[cyclinglady]

If you doubt your celiac disease diagnosis, gather up all the records and get a second opinion from a GI who is celiac savvy.  Did they even run the celiac blood panel?  It sounds like you went back on gluten for a full three months prior to your endoscopy.  It also sounds like your GI ruled out other things that could cause villi damage.  Was Crohn’s ruled out?  

Before I subjected myself to a CT,  I would trial the Fasano diet for a good three months and keep it low carb and dairy free to address the SIBO-like issues as Ennis and Karen suggested.   Seems like a much safer option.  About 60% of celiacs fail to get well?  Why?  Because most make mistakes on the diet.  

 

 

[GlutenFreeRegerts]

Wow, that was fast - maybe this whole forum thing actually works. Thanks everyone.

1 hour ago, kareng said:

can you summarize ( in 3 -5 sentences if you ever were tested for Celiac while eating a gluten diet and the result. 

Yes, I was tested on two occasions:

January 2016 (ate gluten regularly for entire life preceding this)

• Test: Transglutaminase antibody blood test
• Result: borderline value (I'll try to find the exact number but can't recall right now)

Summer 2017 (ate gluten for ~3 months preceding this)

• Test: Endoscopy+small bowel tissue biopsy
• Result: visibly fine, but biopsy detected villi atrophy

1 hour ago, kareng said:

Then what is the question you want to ask?  

I have a lot of them but let me start with:

Have you ever heard of someone with asymptomatic celiac disease becoming symptomatic once they went gluten-free, but returned to being asymptomatic if they started eating gluten again? 

Have you ever heard of someone with asymptomatic celiac disease but no issue with milk whatsoever having a  hard time with milk (but not cheese) after going gluten free?

 Is celiac disease connected to the development of hypothyroidism in any way that wouldn't involve thyroid antibodies (i.e. Hashimoto's)?

49 minutes ago, cyclinglady said:

Let me get this straight.  You have celiac disease based on biopsies (villi damage).  You also have issues with milk products.

Sort of; before going gluten-free, I had no (known) allergies or any gut related symptoms of any kind, and drank a lot of milk. Then I went gluten-free, and after a while started having trouble with milk and developed some constant gut pain. Notably, both of these issues went away when I started eating gluten again in prep for getting an endoscopy+biopsy to confirm Celiacs. Said biopsy showed villi damage, so was diagnosed celiac disease. Going gluten-free again after biopsy caused the issues from before to return, but would still go away whenever I ate gluten (which I did whenever the pain got bad). Eventually, potentially due a health-related incidence, I did start having a gluten response, and so I stopped periodically eating gluten like this. Thus, where before I'd eat gluten when the gut pain got bad and it would go away, now the gut pain just continued to grow until I was given antibiotics, which like eating gluten had, made the gut pain go away.

49 minutes ago, cyclinglady said:

Have you had allergy testing by a board certified allergist?

No, but I'll be looking into it now.

49 minutes ago, cyclinglady said:

Have you ever heard of Mast Cell Activation Syndrome?

No, but I just read a little on it. One thing I should note is the only symptom I've seen from any foods so far is gut pain, so whether responses are allergic or not isn't clear. So I'm thinking (hoping) this isn't the problem, but I'm going to check on the antibody stuff just in case. Extremely useful to know about, so thank you!

Regarding autoimmune thyroiditis without antibodies, how does one identify it? Do you know if there is another way to verify it?

49 minutes ago, cyclinglady said:

I think that you should make sure you are really gluten free first.  Do you ever eat out?  If so, stop!  Then ditch the dairy (just temporarily).    Consider the Fasano diet (very strict gluten-free) or the Autoimmune Paleo diet being sure to avoid dairy. 

I don't think I was quite gluten free at first, but got there after around 6 months (just learning what to watch for and such). I experimented with eating out, and found it doesn't seem to make much of a difference as far as the gut pain goes, nor any of the other symptoms. Still, I don't really do it presently barring a few exceptions (i.e. job-related conference, wedding, etc.).  I'll try to learn more on the diets and consider giving them a try.

49 minutes ago, cyclinglady said:

Know that it can take up to a year or longer to really heal from celiac disease.  Know that some people, like me, never had GI issues.  I had to trust my biopsies and the advice my GI gave me to go gluten free.  Oddly though I developed GI issues after my diagnosis, if I had any accidental gluten exposures.  

Thanks for sharing your experience; that's a lot like some of what I've read. What I just don't understand is why (or really even how) eating gluten again was making me feel better before. I've found no similar cases, and barring either some weird gut biome explanation or some very powerful psychosomatic effect, haven't found any possible explanations.

 

Re: Ennis_TX - thanks for the advice (especially SIBO-related), sharing your experiences, and all the useful links; I will look into them more closely.

 

14 minutes ago, cyclinglady said:

Did they even run the celiac blood panel?

...

It also sounds like your GI ruled out other things that could cause villi damage.  Was Crohn’s ruled out?  

Not sure what a celiac blood panel is; I just got a transglutaminase antibody test as noted before, so...no? I'll have to ask about it.

Regarding other possibilities, if my GI ruled them out I don't recall talking with him on it. Bacterial overgrowth is a possible cause of villi atrophy, so that could have caused it, but I'm not sure if atrophy while being gluten-free wouldn't have healed in the 3 months before the biopsy. I guess it depends on how long it takes for villi atrophy to heal (this is all assuming that my initial gluten-free diet was causing bacterial overgrowth and was solved by returning to a glutenous diet, which is of course not a given).

 

Thanks again all! I have some reading to do...

[cyclinglady]

48 minutes ago, GlutenFreeRegerts said:

January 2016 (ate gluten regularly for entire life preceding this)

• Test: Transglutaminase antibody blood test
• Result: borderline value (I'll try to find the exact number but can't recall right now)

You were only given the screening TTG test.  A complete celiac panel includes the DGP and EMA.  I have never had a positive TTG test (repeated many times).  I only test positive to the DGP IgA.  About 10% of celiacs are seronegative.  

Summer 2017 (ate gluten for ~3 months preceding this)

• Test: Endoscopy+small bowel tissue biopsy
• Result: visibly fine, but biopsy detected villi atrophy

Visibly fine means your doctor had an older scope and could not see damage.  Your biopsy did detect villi atrophy and that is what counts. 

I have a lot of them but let me start with:

Have you ever heard of someone with asymptomatic celiac disease becoming symptomatic once they went gluten-free, but returned to being asymptomatic if they started eating gluten again? 

Even Dr. Alessio Fasano (one of the leading celiac disease researchers) has stated that celiac disease is like a chameleon.  Symptoms can change.  

Have you ever heard of someone with asymptomatic celiac disease but no issue with milk whatsoever having a  hard time with milk (but not cheese) after going gluten free?

Going gluten free can not cause harm.  If you have an issue with milk, it is either due to small intestinal damage, allergies or a genetic lactose intolerance.  You might have thought you were gluten free, but you might not have been.  That could explain the inability to digest lactose.  If you ate out or consumed processed foods,  you can not safely say you were gluten free.  The only way to test without another biopsy at this time is to trial the Fasano diet.  

 Is celiac disease connected to the development of hypothyroidism in any way that wouldn't involve thyroid antibodies (i.e. Hashimoto's)?

Again, like some celiacs, some autoimmune thyroiditis patients test negative on antibodies.  But  celiac disease is known to affect any body system.  Your hypothyroidism could be temporary or just the start of autoimmune thyroiditis.  Google it.  

Sort of; before going gluten-free, I had no (known) allergies or any gut related symptoms of any kind, and drank a lot of milk. Then I went gluten-free, and after a while started having trouble with milk and developed some constant gut pain. Notably, both of these issues went away when I started eating gluten again in prep for getting an endoscopy+biopsy to confirm Celiacs. Said biopsy showed villi damage, so was diagnosed celiac disease. Going gluten-free again after biopsy caused the issues from before to return, but would still go away whenever I ate gluten (which I did whenever the pain got bad). Eventually, potentially due a health-related incidence, I did start having a gluten response, and so I stopped periodically eating gluten like this. Thus, where before I'd eat gluten when the gut pain got bad and it would go away, now the gut pain just continued to grow until I was given antibiotics, which like eating gluten had, made the gut pain go away.

Celiac disease is autoimmune.  Constant exposures can cause the body to attack for weeks or months.  During this time, you can develop other autoimmune disorders or an illness like SIBO.  You could have concurrent multiple issues going on.  

Regarding autoimmune thyroiditis without antibodies, how does one identify it? Do you know if there is another way to verify it?

Often you would have an enlargement or nodules, but it may be too early to diagnosis.  If your TSH is elevated, treating with thyroid replacement, should help with symptoms and may even calm down an autoimmune attack.

I don't think I was quite gluten free at first, but got there after around 6 months (just learning what to watch for and such). I experimented with eating out, and found it doesn't seem to make much of a difference as far as the gut pain goes, nor any of the other symptoms. Still, I don't really do it presently barring a few exceptions (i.e. job-related conference, wedding, etc.).  I'll try to learn more on the diets and consider giving them a try.

Some celiacs are asymptomatic.  Eating out can be difficult.  Since you are experiencing issues, you should be on a strict diet.  I never eat out unless it is a dedicated gluten-free restaurant.  This works for me.  I have healed villi.  Gluten exposures for me, trigger not just my celiac disease, but my other autoimmune disorders and Mast Cell issues.  Eating out is not worth it.  But some celiacs can handle eating out.  Do so, once you feel 100% well.  

Not sure what a celiac blood panel is; I just got a transglutaminase antibody test as noted before, so...no? I'll have to ask about it.  

You should have follow-up care for celiac disease.  This could include bone scans and repeat antibodies testing.  This includes the TTG, EMA and DGP (IgA and IGG versions).  

Regarding other possibilities, if my GI ruled them out I don't recall talking with him on it. Bacterial overgrowth is a possible cause of villi atrophy, so that could have caused it, but I'm not sure if atrophy while being gluten-free wouldn't have healed in the 3 months before the biopsy. I guess it depends on how long it takes for villi atrophy to heal (this is all assuming that my initial gluten-free diet was causing bacterial overgrowth and was solved by returning to a glutenous diet, which is of course not a given).

 My bet is that you were still getting gluten exposures.  That is why you developed SIBO which should have been confirmed by another endoscopy.   People make mistakes in the diet all the time.  That is often why healing can take one to 2 years.  Are all your medications gluten free?  Did you call the manufacturers yourself?  Talk to a pharmacist?  Do you consume oats?  Do you kiss anyone who consumes gluten?  Live in a gluten-free home or have strict food safety procedures in place?  Have small children?  The list is almost endless.  

 

 

Edited June 7, 2019 by cyclinglady

[kareng]

My experience has been that people who think they have no “ Celiac symptoms” actually do.  They might not be Gut related.  Or they realize that some things they thought were normal, digestive-wise, have gotten better.  Not all Celiac issues are gut related

 

https://celiac.org/about-celiac-disease/symptoms-of-celiac-disease/

Edited June 7, 2019 by kareng

[mcbphd1]

If I were guessing, I would guess that  you went gluten free and your system started to heal and your immune system was recovering.  Then maybe you were getting small exposures to gluten due to inexperience with the diet and you were having much stronger reactions because your immune system had started to heal.  Just a theory - I know I had almost no gastro symptoms, but once I went gluten free, just a small cross-contamination amount would set off a cascade of symptoms lasting for weeks.

[GFinDC]

Recovery from celiac damage is not always a straight line up.  It can be a series of periods of progress and retreat.   Symptoms can come and go.  Because celiac is so variable with the symptoms it can be hard to diagnose.  Some people have no GI symptoms at all, but still have celiac.

Every time you ingest any gluten your immune system is re-triggered to attack.  An immune response can go on for weeks or months.  It's not a good idea to gluten yourself on purpose.  You are damaging your body when you do so.

[knitty kitty]

Here's an article that explains the gluten - gut - microbiome connection thoroughly.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4809873/

And here's a study done on the connection between low vitamin B12 and OCD.  

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3271502/

And B12 deficiency and hypothyroidism:

https://www.ncbi.nlm.nih.gov/pubmed/18655403

Celiac Disease causes malabsorption which results in malnutrition, aka vitamin deficiencies.  Vitamin deficiencies affect how your body and brain function.  

You need vitamins to make those neurotransmitters your brain needs to function.  Vitamin B12 is maybe one of the most important for brain function.  Without it one can suffer mental changes such as brain fog, OCD,  dementia and depression a long time before a clinical manifestation such as anemia shows up.  Some Celiacs have a problem absorbing sufficient B12 from their diets because of the damage to their villi.  B12 (cobalamine) needs some other B vitamins to function properly like folate (B9) which needs riboflavin (B2) which needs thiamine (B1) which needs niacin (B3).... The nine B vitamins all work interdependently.  

If you're deficient in B12 and other B vitamins, when you go gluten free, the deficiencies become readily apparent.  Gluten containing foods are required by law to be enriched with vitamins because vitamins are stripped out during processing.  Removing this source of vitamins when you go gluten free can make you feel awful because you're deficient already.  You feel better returning to gluten containing foods because you get those vitamins again.  It's nearly impossible to eat enough gluten free foods to make up for the deficiencies due to malabsorption and damaged villi.  

Ask your doctor or nutritionist about supplementing with the methylated forms of B vitamins.  The methylated forms are readily utilized by the body.  Baseline vitamin deficiency tests should be done before starting supplementation or three weeks free of supplements.  The water soluble B vitamins (whether from foods or supplements) will only stay in your system three weeks.  After three weeks, deficiencies begin.  

I suffered through the OCD/depression/dementia from B12 deficiency and other B vitamin deficiency problems (pellagra and beriberi).   Please don't give up on the gluten free diet!  The Autoimmune Protocol Paleo diet along with supplementing with methyl forms of B vitamins really does work!

[knitty kitty]

Oh, and stay dairy free for a while!

[Posterboy]

GFRegrets,

I 2nd everything Knitty Kitty said and add check into some Zinc lozenges.

You will have stars (white spots) in your nail bed if your OCD/ADHD symptom's are from low Zinc levels.

Neatly ..the Zinc lozenges will become metallic in your mouth when your body has absorbed enough Zinc.

Zinc/Copper levels in the bod is tied together and why they are typically sold in a 80/20 balance/ratio.

Taking Zinc sublingually can restore this balance in your body and help your OCD symptom's.

Also try some Magnesium Citrate wtih meals to help with sleep, energy, fatigue and muscle cramps.

Magnesium Citrate is now available as Walmarts....so it is much easier to find than it used to be.

I was you 20+ years ago also look into low stomach acid these are nutrients you commonly become low in your when your stomach acid gets too low.

Here is my story with low stomach acid being misdiagnosed/undiagnosed for years.

I hope this is helpful but it is not medical advice.

Posterboy,

[GlutenFreeRegerts]

I know this is terribly late and worry people won't see it, but I just wanted to say thank you to everyone for all your advice (and the answers to my questions from CyclingLady). The links to studies provided Knitty were truly enlightening for me, as other issues I've had also involve vitamin B problems. The supplements Posterboy noted are also something I'm considering; I don't have white stars in my nail bed so perhaps it isn't that, but now I know its something to watch for. I tried a magnesium supplement for a while a long time ago, but I'm thinking of trying the magnesium citrate as well. 

You can consider me convinced - I will try going off all forms of dairy (?->?->?). I've been angling towards a paleo diet (diet change takes me a while; I'm a terrible cook and don't have a lot of time to figure out what I can eat, so I gradually transition as I figure out what works and is affordable). I was feeling better last week but got worse again this week, so the change is likely just the random fluctuation in symptoms mentioned before. My new doctor thinks a CT is justified after 11 months of the lower left/left side/chest pains, and since it will knock out a wide spectrum of other possible problems I think I agree.

I'll try to post any developments in case its useful. Thanks again for all your help!

[Posterboy]

25 minutes ago, GlutenFreeRegerts said:

I know this is terribly late and worry people won't see it, but I just wanted to say thank you to everyone for all your advice (and the answers to my questions from CyclingLady). The links to studies provided Knitty were truly enlightening for me, as other issues I've had also involve vitamin B problems. The supplements Posterboy noted are also something I'm considering; I don't have white stars in my nail bed so perhaps it isn't that, but now I know its something to watch for. I tried a magnesium supplement for a while a long time ago, but I'm thinking of trying the magnesium citrate as well. 

You can consider me convinced - I will try going off all forms of dairy (?->?->?). I've been angling towards a paleo diet (diet change takes me a while; I'm a terrible cook and don't have a lot of time to figure out what I can eat, so I gradually transition as I figure out what works and is affordable). I was feeling better last week but got worse again this week, so the change is likely just the random fluctuation in symptoms mentioned before. My new doctor thinks a CT is justified after 11 months of the lower left/left side/chest pains, and since it will knock out a wide spectrum of other possible problems I think I agree.

I'll try to post any developments in case its useful. Thanks again for all your help!

Glutenfreeregrets,

You are not too late...see that number at the top right of the thread when ever you post  a response "8" followers of this thread got your updated comments....

And we are always glad to help in anyway we can...we all know what you are going through.

I hope this is helpful.

Posterboy,

[Posterboy]

GlutenFreeRegrets,

You might not have a Zinc deficiency but it can help OCD symptom's.

It is easy to trial with Zinc Lozenges ...if they are bitter ...you have enough zinc.

I wanted to focus on two things ...Knitty Kitty's well worded comment on the inter constructiveness of B-Vitamins and your SIBO diagnosis.

(Note: This will probably be too long so hang in there GFregrets) I am typing this out as these ideas come to me ...

B-Vitamins are like a web of life. ..stress makes them lower ...like one feels when they are a pint low in blood....as an example.

If you have a stress problem it is probably related to be low in one or most likely several B-Vitamin(s) ...because being low in one ...leads to you being low in several (often) as Knitty Kitty mentioned.

see this great abstract summary of the inter connectivity of B-Vitamins.

https://www.sciencedirect.com/science/article/pii/S0009279706000998

And this simple diagram that explains in simpler terms how these interconnections are related.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4772032/figure/nutrients-08-00068-f001/?report=objectonly

you can quickly see the krebs cycle fails/falls completely flat without B-Vitamins.

That and Magnesium often explain the CFS  you have been experiencing.

If you have SIBO  then this beneficial cycle can be broken... causing it to be a viscous cycle.

See this "Small Intestinal Bacterial Overgrowth: A Comprehensive Review" link that explains in more detail this dependencies.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3099351/

Especially as it relates to B-12 deficiency which effects Homocysteine levels

quoting

"A common complication of bacterial overgrowth is cobalamin (vitamin B12) deficiency. Patients with normal intestinal enteric flora rely on gastric intrinsic factor to bind to vitamin B12 to permit absorption in the ileum. An animal model of SIBO demonstrated competitive uptake of vitamin B12 by bacteria (especially aerobes). Human subjects with atrophic gastritis and bacterial overgrowth absorbed significantly less protein-bound vitamin B12 compared to controls, although this was reversed with antibiotic therapy. Folate levels can be normal but frequently are elevated due to increased synthesis of folate by small bowel bacteria."

You should also have your stomach acid checked because SIBO and low stomach acid often occur together.

Here is some home testing methods you can easily do to confirm these suspicion's.

https://drjockers.com/5-ways-test-stomach-acid-levels/

if being a grad student is stressing you out too much you might reduce your course work for a semester.

stress is common before someone develops heartburn often when ironically can be a sign of low stomach acid not high stomach acid as it is commonly believed.

this fox news article covers it well.

https://www.foxnews.com/health/gerd-or-nerd-new-type-of-heartburn-doesnt-respond-to-drugs

and according to the Howard Hughes Medical Institute (HHMI) low stomach develops before an ulcer or H.pylori not because of it much like your SIBO.

https://www.hhmi.org/news/excessive-growth-bacteria-may-also-be-major-cause-stomach-ulcers 

it starts first (IMHO) in the stomach then spreads to the small intestine.

taking replacement stomach acid (BetaineHCL) can help with these symptom's by restoring a 80/20 good balance (80 good/20 bad) bacteria.. .a  healthy balance.

see this research that explains how bad bacteria (actors) effect first your bile and then your small intestines.

https://www.ncbi.nlm.nih.gov/pubmed/7735920/

The article is specifically about H2 blockers but the conclusion is the same once stomach acid and/or bile production is interfered with then (bad) bacteria grows out of control.

As you know taking antibiotics can help your restore this balance ...but if the stomach acid production is is not restarted the conditions can come back  ... and back again and why having SIBO is hard to get rid of for good unless you also in tandem attack the low stomach acid also.

I must stop this is getting too long.....like way too long ...but I had a lot of ground to cover.

Prousky studied how taking either stomach acid or B-3 Niacin can help treat GI problems 15+ years by helping us build our stomach acid naturally but few people get or understand it today because we think or taught it too high when usually it is too low...

see this link from chris kreser

https://chriskresser.com/what-everybody-ought-to-know-but-doesnt-about-heartburn-gerd/

And this one from prousky who studied this phenomen on students like yourself who got  heartburn from too much studying.

http://orthomolecular.org/library/jom/2001/articles/2001-v16n04-p225.shtml

If you want to know more about low stomach acid being misdiagnosed just search for the posterboy on celiac.com and many threads will come up about it.

Here is a nice recent thread started by edgymama

https://www.celiac.com/forums/topic/124203-back-after-5-yearsendoscopy-on-may-2/?tab=comments#comment-1002542

I hope it wasn't way...way...too long and why I wrote my blog posts to keep from typing all these things out again. .. and again. ..but sometimes it is necessary.

I have tried to explain this in more detail on posterboy blog post's if you are still reading t this and want to research it some more here is a good blog post to start with.

People like you are why I still participate in the forum(s) because I was you 20+ years ago.... and nobody knew...so I had to study it myself.

I hope this is helpful but it is not medical advise.

2 Tim 2:7 “Consider what I say; and the Lord give thee understanding in all things” this included.

Posterboy by the grace of God,

[GlutenFreeRegerts]

First, thanks a lot Posterboy; I got a lot of ideas from what you posted (and also your detailed blog), and have tried a number of them over the past few months. Your post wasn't too long at all, and I'm truly grateful you took the time to make it. It is both very useful and comforting, as many of the doctors I've been seeing don't really provide anything I can try looking into, mostly just seem confused by my symptoms, and either avoid giving any clear direction or  basically just suggest I keep doing as I have been. That can be terribly frustrating, so it's nice to have other sources I can investigate. 

 

I'm happy to say I'm doing better than I was a few months ago (where I was so tired all the time and in enough pain I felt like I was starting to come apart), even if I can't say I'm back to my full healthy self.

The first development I'll note is that I got the CT scan, and I appear to have diverticulosis (not infected at time of test). Nothing else of note was found. Thus, I suspect the mucus in stool and irregular bowel movements were in large part from this, and, likely at least in part, the recurring SIBO as well (basically bacteria get into the diverticula (i.e. intestinal pockets) and can grow out of control). Unfortunately, there isn't really any cure for diverticulosis, but usually having it doesn't cause symptoms (in fact most people will have some by the time they're 60 or so). It is very rare to develop them before being at least 30, so I suspect mine may have developed from those times I mentioned where I had terrible gut pain and started developing constant pain in my middle and lower left abdomen. My PCP couldn't tell me exactly where the diverticula are, but I have a suspicion the bigger ones will be right around where the constant pain is. I'm scheduled to see a GI specialist who I am hoping can either tell me or (preferably show me) exactly where they are; I was thinking perhaps one was near a vein and/or nerve, which might explain some of the weird left leg/left arm/chest pain symptoms and why they get worse when my gut is inflamed or bloated (again, not necessarily anything to be done for it if that's the case, but knowing would be useful). 

Second, going completely dairy free seems to have fixed the swollen feeling in my neck (which I'm basically certain is my thyroid), as well as most of the bloating and gut pain (though not the left abdominal pain). On the one hand, I'm glad to have figured part of the problem out; on the other, I can't help but be saddened by this development (it is difficult to express just how fond of dairy I've always been). I've done some tests, and sure enough eating dairy in any significance causes the thyroid swelling and gut discomfort to return. I intend to try testing gluten again once I've fully recovered from my most recent dairy test, since last time it seemed I was fine but my general unwellness made it hard to tell. Nuts are still difficult for me in large quantities (possibly related to the diverticula).

I've continued with the B vitamins, and tacked on a zinc+magnesium booster. The B vitamins helped a lot with recovering some of my energy (especially early on), though it is admittedly difficult to tell how much is from the B vitamins and how much is from the loss of dairy. My meditations and OCD symptoms have also improved somewhat, though again, it's difficult to determine how much of that is related to the reduced pain/tiredness and how much is the supplements.

So overall, I'm doing better, though am not yet fully recovered. I still don't know why going gluten-free screwed me up so bad, though I do have some ideas. For instance, when things were getting bad, I remember sometimes waking up in the morning with both burps that tasted strongly of last nights dinner and feeling like my stomach wasn't empty, which from what I know now sounds like a low-stomach acid issue. Regardless, my guess is that something in my new gluten-free diet threw my gut/bile out of whack. This either lead to SIBO which lead to diverticula or vice-versa, which in turn gradually damaged my gut lining (this might explain why dairy started to hurt when gluten-free?). I honestly still have no idea why bringing the glutenous foods back into my diet was so consistently relieving the issues and allowed me to consume dairy without pain again, but for all I know it wasn't the gluten and just something that happened to be in all the glutenous foods I would start eating when the pain from being gluten-free got too bad. While eating gluten, I thought I identified a few occasions of mild brain fog that otherwise didn't occur while gluten-free, so I think being gluten-free was doing what it was supposed to, but the diet change threw something else in my gut off and that's what lead to all the trouble.

Welp, that's everything new I can think of. I'm still hopeful that I can get rid of some or all of the left side symptoms, but even just knowing its from the diverticula would be nice. I'd also like to test once more whether I've truly "activated" celiac's disease or not, and whether there is something I can do to at least be okay with dairy again. I'm also looking into an alternative medicine doctor specialized with celiac disease, so hopefully that might help resolve some of the remaining uncertainty as well.

Thanks again for everyone's help; I'll try to give another set of updates as they come in the next few months. I hope the summer goes well and thanks again!

Edited September 14, 2019 by GlutenFreeRegerts