Feeling lost post endoscopy please help: does anyone have "gluten sensitivity" like this?

[physicsgirl]

Hello,

I'm in a bad situation and I don't know what else to do, so I decided to reach out here for some support to help me through a difficult time. I am a 21 year old college senior pursuing a physics degree, and my health is not good. I have been struggling with stomach pain, strange rashes, headaches, mental fogginess, and depression for a long time, and I was diagnosed with Hashimoto's a year ago. My former doctor told me to try a gluten free diet because of the association with gluten issues and thyroid disorders, and because my mom had (undiagnosed) severe gluten intolerance.

So I tried going gluten free like my mom, and I felt better than I ever before. I soon developed an extreme sensitivity to the stuff: I could eat a crouton and get sick for weeks with horrible stomach cramping and bloating, pale yellowish diarrhea, skin rashes and black depression. Last fall, however, I started having moderate to severe undigested diarrhea and endless crampy stomach pain and bloating. Desperate, I found a new doctor who sent me to a GI.

The GI told me in order to figure out what was going on I needed an official diagnosis, scheduled a colonoscopy/endoscopy, and instructed me to eat gluten for one week. Eager for answers, I agreed to the gluten challenge. I have NEVER been so sick in my life. All the usual symptoms appeared of course: horrible cramping and pain, bloating, yellow diarrhea, itchy skin rashes, severe nausea, depression. But some fresh horrors appeared as well. Alarming mental effects: loss of coordination, concentration, short term memory, and depth perception. Asthma symptoms, a swollen and painful thyroid, bleeding gums, aching joints, and strangely dry eyes and mouth and random ear problems.

I had the endoscopy and they said I had gastritis, intestinal inflammation, and "smoothing" of the microvilli of my small intestine, and told me I had celiac. I got pictures of the smooth parts of my duodenum. They told me to go gluten free again and that the symptoms would go away within the week. They haven't: It has been a week, and it's slow going. I still have severe diarrhea, and the stomach pain is fading slowly. Other symptoms are more pronounced: head and body aches, asthma, mouth sores, black depression, and the worst dry eye and mouth that I've ever experienced. I had my first asthma attack since I stopped gluten a year ago.

But the final straw that broke me was this: the biopsy was negative. My doctor called me to say there was a mistake and that I don't actually have celiac, its just "non-celiac gluten sensitivity". Apparently the damage to my villi was "not bad enough to qualify as on the celiac spectrum". The doctor just said to keep away from gluten and take over the counter pain meds.

This does not sit well with me at all. I went for stomach pain and diarrhea, now its much worse and I'm supposed to just wait until it stops. They have no advice as to what caused the diarrhea or gastritis or vilious atrophy, I'm losing weight, I'm falling behind in classes, miserably depressed, my hashimotos is starting to flare, and my eyes are so painfully dry I can barely see. I was ok with the idea of celiac: I'm a scientist, and to me it made sense. But I have never heard of "gluten sensitivity" like this, and all the research I find says it doesn't exist. There is little legitimate support, and I can't find anything that suggests damage to the intestines can be caused by it. The doctor is happy with the diagnosis, he says it may not be totally accurate but it is much less serious than celiac. He doesn't have any answers as to what caused the other symptoms except "autoimmune problems", and assures me they will go away eventually. He doesn't know what caused the gastritis, atrophy, or diarrhea but says it can't be IBS or H Pylori. So I am completely without support, and am in constant pain. I'm terrified that now people won't take me seriously, especially with the talk of gluten sensitivity being "fake", and have no idea how to make the symptoms stop.

So I come here as a last resort. Has anyone gotten a "gluten sensitivity" diagnosis like this before? Is it a real thing, and can it cause these symptoms? And how can I come to terms with it without losing my mind?

Any support or suggestions would be greatly appreciated.

[Irene Joanne]

So sorry you're struggling. Did you ever have the blood work done to check for celiac?  I have celiac and Hashimoto's too and since going gluten free my thyroid antibodies are going down. Honestly I'd go gluten free just because of the thyroid problem. 

I'm finding out that more than celiac is going on with me. I'm reacting to foods high in salicylates as well. So not impossible you have gluten problems and something else going on. I'm getting referred to an allergist, but in Canada I'm told I may have to wait 18 months to get an appointment?

[squirmingitch]

Oh honey, I'm soooo very sorry all this has happened to you. The doctor is an ass, plain & simple. You don't get villi damage from non celiac gluten sensitivity -- you can get all the other symptoms but NCGS does not damage the villi. I would bet everything I own that you are celiac. You've just gotten a doc who doesn't know what the hell he's talking about. Worse yet, he's left you with NO diagnosis & confused the crap out of you. With the symptoms you're having you can't eat gluten again -- it's way too dangerous for you. You can't ever do a gluten challenge again. BTW, you were supposed to eat gluten for TWO weeks for the endoscopy not the ONE week he told you to. See? Another example that he doesn't know what he's doing when it comes to celiac. Never mind because you wouldn't have been able to do it. It sounds like you would have ended up in the hospital.

Get your records. I bet the pathology on those biopsies will make things clear. You can post that here if you wish -- we have members who are really good at interpreting those things.

I am very sorry to tell you that you're just going to have to ride this out. It WILL get better, I promise but there is no magic pill to make it all go away. Drink lots of water & rest as much as possible. If you don't absolutely have to do something, then don't do it - just rest. The symptoms you are experiencing are typical of celiac. We tend to get MUCH stronger reactions after we have been gluten free & that's exactly what happened to you. You were gluten free & then went back on gluten for the endoscopy & your body went haywire. These damn doctors who tell people to try going gluten free & see how they feel just screw people up so bad! Then when the person goes back on gluten to get tested, they get sick as all hell.

Please go to the coping section & read the Newbie 101. I know you've been gluten free before but we want to make sure you don't get cross contaminated because it sure sounds like you won't be able to take it if you do.

{{{{{{{{{{{{{{{{{{{{{{{{{{HUGS}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}

[physicsgirl]

Thank you, it means a lot! Sometimes the doctors brush aside the symptoms so much that I wonder if I'm just losing my mind. Any hint of not being alone in this, however faint, is incredibly reassuring.

I was only given the blood test as an afterthought after I had been gluten free for over a year. And when I say gluten free, I mean pretty strict: I know I have cross contamination issues. I kept getting hives and random stomach pains until I stopped using communal cooking tools, for example. So of course the blood test was negative, and they didn't give me one after the gluten challenge.

I'm wondering if it's a Marsh scale thing. The photos they took in the endoscopy show smooth villi, but the samples they took must not have reflected the damage. I haven't gotten a copy of the results yet but I'll definitely be curious to see. Has anyone else had a similar experience with the gluten challenge?

I guess I just have to keep gluten free and hope that the future brings new insights into autoimmune disorders. I know it usually takes years before people find answers. I guess I have some time to put in before they can help me, if ever. 

Until then, I'll keep trying to figure out how to get healthy on my own I guess, with guidance from resources like this! I'll definitely check out the coping section, even if I don't really belong without the celiac diagnosis. The hyoscyamine they have me on is starting to kinda work for the pain again. Slowly but surely I hope to start to feel better, although the symptoms are all still pretty severe at this point, more than a week later.

So thank you. So much.

 

[squirmingitch]

Aw, you're so welcome. I just wish this hadn't happened to you. Before I forget...... NEVER say you don't belong here without a celiac diagnosis. UNTRUE!!! this site is also for NCGS as well AND there are plenty of people on here who had circumstances very much like yours where they got screwed up by bad information from the docs and couldn't get a diagnosis. Self diagnosis exists. 

The thing is that a blood test wouldn't have done you any good because for that you would have had to have been eating gluten for 12 weeks in order for the antibodies to build up to a measureable level. I believe the reason your doc said you have celiac & then rescinded it is because the antibodies didn't show up in the pathology because he only had you eat gluten for 1 week instead of two. From what it sounds like, the damage showed up loud & clear. If those photos showed smooth intestines then any fool should be able to realize what happened to you.  So this is what I'm thinking..... get your records, ALL of them. then find a truly celiac savvy doc & take those records to him/her along with notes you take now of your reaction since going back on gluten and the recovery time from that. Make sure to explain that the doc only had you eat gluten for 1 week prior to the biopsy. You may at least walk out with a diagnosis of NCGS which will afford you some measure of protection and validation.

If I were you, I would consider myself celiac. I'm just saying....

[SLLRunner]

I agree with @squirmingitch about considering yourself celiac because the doctor said that you are, even if he reneged on it. If he was not sure, he should have never said you were in the first place.  Now, that doctor has forced you into needing to get a second opinion because celiac disease is a serious autoimmune disease. Because of this, you absolutely cannot eat gluten again. 

I don't have a celiac diagnosis either and I am hanging out here. I do know, however, that I am sensitive to gluten and/or wheat, but I won't find out for three weeks whether celiac is my problem.

Do you know, also, that a gluten free diet often helps people with acid reflux and GERD, and the FODMAP diet for IBS is largely gluten free because of the wheat sensitivity? 

So, there are many reasons to hang out here. 

 

[HannahZ]

Hi Physicsgirl,

I have a gluten sensitivity similar to yours. I've been trying to figure out details of mine for the last four (almost five) years. (By the way, I like your name, "physicsgirl" and I should have called myself "mathgirl" because that's my field). I have some suggestions for you, based on my experience.

1. Stick to a very strict gluten-free diet. Avoid cross contamination. Yes, you really ARE that sensitive. In fact, here is what I learned: after the gluten-free challenge I was even MORE sensitive. So if you are eating gluten-free and still having symptoms of having been glutened, then consider a stricter gluten-free diet, for a while. The strictest I know of would be the "refractory celiac diet" developed by Dr. Fasano and others (you can google that for more information). I don't think you necessarily need that strict diet forever, but you might need it for 3 to 6 months, to give your immune system a break.

2. Send your pathology slides out for a second pathology opinion. I recommend Johns Hopkins second opinion pathology service. It will cost you $250 but information gained could be worth so much more. The process is easy. Go online at Johns Hopkins Medical for details on how to get your pathology slides or tissue blocks sent.

3. Get tested for Sjogren's Syndrome and sarcoidosis. The sarcoidosis screen is a simple, inexpensive blood test ("ACE" - for angiotensin converting enzyme).  The Sjogren's testing is more complicated, as there are antibodies, anti-SSA and anti-SSB, but only about half the people with Sjogren's have those antibodies, and if you are antibody negative, you need to get a lower lip biopsy (it is inside the lower lip, to take some tiny salivary glands). I am making these suggestions because of the symptoms of dryness (for both Sjogrens and sarcoid), but your comment about rashes, random ear problems, etc. makes me think of neuro-sarcoidosis, gluten sensitive.

Check this out : Open Original Shared Link

Another little known fact, patients with neurosarcoidosis very often have 100% clear chest xrays.

Sjogrens is supposed to occur mainly in older people (middle aged women), but recently it has been showing up in younger patients as well (your age). But that's a reason doctors might not think of testing you for it.

If you have either Sjogrens or sarcoidosis, then gluten would in your case be a trigger causing a massive flare up of symptoms.  If you live somewhere other than NY, MD and NJ (maybe MA too, not sure), then you can order these blood tests yourself through one of the online labs where patients can get bloodwork without a doctor's order (you can google for names of such places, use words like "direct lab testing"). States like NY, there is a paternalistic idea that we should not be permitted to order our own tests (then in cases like mine, doctors get things all wrong..... for YEARS).

I developed severe neuro symptoms after my gluten challenge, and damage showed up on MRIs. I was even thought for a time possibly to have MS. Finally, after far too long, (in fact just last month), someone tested my ACE level and it was ...HIGH. Looks like I have been suffering from a gluten sensitive neuro-sarcoidosis. There is some evidence I might have the Sjogrens as well. I am of northern European heritage and sarcoidosis is more common in that group (I am DQ2 positive as well, another gene common in northern Europe).

These last four years I have struggled with disabling symptoms, while hearing from doctors that they could not quite pin down exactly what was causing all of it. Like you, I am in favor of making the effort to "pin it down" -- and I think if you push the doctors to make that effort, you may just succeed. Good luck, and I hope you feel better soon.

Hannah

[Gemini]

Physicsgirl..........please listen to the incredibly smart lady named HannahZ who gave you some awesome advice about some of your symptoms.  Especially the part about Sarcoidosis and Sjogren's.  I have Celiac, Sjogren's, Reynaud's Syndrome and Hashi's thyroid disease.  My brother, who passed away last August from Type 1 diabetes and suspected Celiac, also had Sarcoids.  I know a lot about this stuff.

Contrary to what I posted about my health, I am not falling apart.  In fact, at almost 57 years old, I can kick some ass.    This was not always the case when my AI problems went undiagnosed because of stupid doctors.  I will say this....what you posted about your eyes and mouth screams of Sjogren's Syndrome and mine was horrible before I figured the Celiac out and got diagnosed.  I was so light sensitive, I wore my sunglasses inside.  My eyes literally ached because they were so dry and I have dental problems galore because that's what Sjogren's can do.  I have been gluten-free for 11 years this April and, although I still have to follow good protocol, the symptoms of all my AI problems have greatly decreased to a comfort level I can live with.  You can get your life back but you need to be very gluten free and it will help with all your other problems. I was diagnosed with Sjogren's via blood work.........HIGH antibodies so I didn't need the lip biopsy.

Hannah........you really should be a doctor!  

 

[Gemini]

I forgot to add.......to alleviate and help with some of the dryness, I use Biotene mouthwash. It is specifically geared for severe dry mouth and has a really nice, minty flavor.  Not the sharp minty flavor of alcohol based mouthwashes because there is no alcohol in Biotene. It contains the enzymes present in your saliva that protect your teeth from dental decay.  It really makes a difference and makes your mouth feel good.

The eyes......use one of the OTC eye drops for lubricating your eyes.  I use Refresh and it makes a big difference.

Hope this helps.........

[HannahZ]

Thank you for the compliments, Gemini. You made my day. I like your advice too!

I second your advice on the eye drops. I need to use the preservative free ones for the most part, but I keep a bottle of the regular (with preservative) in my purse, because that's easier on the run. 

Physicsgirl, I hope you are finding the feedback helpful, and that it's helping you feel less lost. Doctors are not always the best at pushing for answers (that's an understatement-ha!) - but you are entitled to keep looking, and I hope you will. Don't let anyone intimidate you, and don't allow them to minimize your symptoms. Pay attention to messages from your body - you know what makes you feel unwell (gluten), so avoid it. Also, in public, I think you should call your intolerance "celiac." That's because what you have is de facto celiac -- it's the severe gluten intolerance. When you are out and about, you need people to take your intolerance seriously, and not think they can expose you to gluten with minimal consequence. I call my gluten intolerance "celiac" in public because that is the word that most accurately conveys to people what kinds of rules I have to follow with avoidance of gluten, down to trace cross contamination. 

I hope you find answers AND feel better, very soon!

[Gemini]

2 hours ago, HannahZ said:

Thank you for the compliments, Gemini. You made my day. I like your advice too!

I second your advice on the eye drops. I need to use the preservative free ones for the most part, but I keep a bottle of the regular (with preservative) in my purse, because that's easier on the run. 

Physicsgirl, I hope you are finding the feedback helpful, and that it's helping you feel less lost. Doctors are not always the best at pushing for answers (that's an understatement-ha!) - but you are entitled to keep looking, and I hope you will. Don't let anyone intimidate you, and don't allow them to minimize your symptoms. Pay attention to messages from your body - you know what makes you feel unwell (gluten), so avoid it. Also, in public, I think you should call your intolerance "celiac." That's because what you have is de facto celiac -- it's the severe gluten intolerance. When you are out and about, you need people to take your intolerance seriously, and not think they can expose you to gluten with minimal consequence. I call my gluten intolerance "celiac" in public because that is the word that most accurately conveys to people what kinds of rules I have to follow with avoidance of gluten, down to trace cross contamination. 

I hope you find answers AND feel better, very soon!

You're welcome!  You really gave good advice and it's not often I see people who know both Sjogren's and Sarcoids.  These are 2 AI diseases that multiple family members of mine have, besides me.

Physicsgirl.........I know how you feel as I was desperate and quite sick at diagnosis. I was down to a mere 92-94 pounds and no one was listening. Make sure what you eat right now is plain, simple and very gluten free. I would bet a month's pay you have actual Celiac Disease, because of the severity of your symptoms. Just because the doctor retracted what he originally said does not mean you do not have it. You have to get better now and can't waste any more time trying to have it on paper. My brother died because his doctor didn't take Celiac seriously and only half assed looked for it. I do not want that to happen to you.

Hannah said for you to label yourself as a Celiac when you leave your house and she is absolutely right.  When I dine out, I make a point of telling them I have Celiac and am not a fad dieter so they know how careful they have to be with the prep. Do not feel guilty about that because it's your health and your life.

You may have to back away from school for a semester so you can stabilize and get back on track.  You are young so it will happen faster. Don't let this be a setback because you will have ample opportunity to finish your education but you cannot do it if you are this sick. Having Hashi's will only complicate things so you need to put your health first for now.  Do you live at home with your Mom when you are not at school?  You need support right now more than anything.  Use Immodium for the diarrhea and drink Pedialyte to prevent dangerous dehydration.  That's what I did when I was in crisis the first week.  Pedialyte is like Gatorade and keeps your electrolytes balanced but it tastes better.  It was gluten-free then but make sure as it's been 11 years since I needed to use it.

Keep close track of your thyroid right now.  When you are in a Celiac crisis, it will affect your thyroid and make you feel worse, as you probably know already.  I have both so feel your pain very much.  But above all, you have Celiac so even though your scientist brain is having trouble with that, let that go.  I believe you and so will everyone else.  Do you think you have to show papers to everyone to prove it?  It's none of their business. You are almost finished with school so once you are out working as an adult, you have more freedom.  

If you have any more questions or need any more information, please do not hesitate to ask for help. You know, I was told for years that it was all in my head and I am floored that people still have this much trouble getting a diagnosis, 11 years on from when I was diagnosed.  Because of your age, you may not have developed Marsh 3 damage yet but have Marsh 2.  For many docs, they won't baptize you Celiac unless they see Marsh 3.  That's like waiting for a diabetic to have a blood sugar of 800, as opposed to 400.  WTF?

[physicsgirl]

This has been SO helpful, so thank you! The feedback is amazing! The symptoms with this have been so bizarre that I can hardly believe it and the doctors certainly have no idea what to make of it besides telling me to take meds and wait. It means so much just to have someone believe me and know what's going on, and the tips are super helpful. It's giving me hope again.

As hard as it can be, I think you're right about the strict gluten free, and I'll try to follow it to the best of my ability. I only have a few more months before I graduate and I'm traveling ALOT to visit various grad schools (going for the physics Ph.D ) so it's a challenge. It's REALLY not a good time for all of this, but I've got to stick it out. I have the eyedrops and immodium I'll check out the mouthwash too! Right now I'm taking the inhaler, tylenol for the head and muscle aches, the thyroid meds, and hyocyamine, which works wonders for stomach cramping if you ignore the side effects of dizziness and heatstroke. Plus I've got turmeric (which I find calms the rashes and itching) and ample amounts of caffeine to get me to class. Yes, I may be running purely on medicine but I'm determined to graduate in May! I've been sick for so long at this point I just want to tough it out. Once summer hits I'll have the chance to take care of myself and relax, but I really hope I'm not still so sick then!

I just looked up Sjogren's and sarcoidosis, and I think you're right when you say it may be worth it to get tested, and I didn't know that you could order blood tests yourself! I live in PA so that might be possible here. I would love to figure it all out even if I have to do it myself, and I don't have the time or money for tons of doctors appointments. You're also right about calling it celiac so people take it seriously. I am so constantly that people will poison me because they think its a fad, or belittle the symptoms because typical gluten intolerance doesn't involve them.

And Gemini, I will try to let go of my discomfort with the official diagnosis! You're right: for all intents and purposes it's celiac. You're also absolutely right about the thyroid trigger: mine is already going haywire and is so swollen I feel like I'm being strangled. Which is annoying because it takes forever to stabilize thyroid levels and my endo doesn't believe that it could fluctuate so much and refuses to check it regularly. Also interesting, I do have tooth problems: 7 cavities last time I went to the dentist. Also I have a D and B vitamin deficiency and I used to have an iron deficiency.

Thank you so much for the tips and support. It's honestly given me the strength to move forward. And I am very, very slowly starting to feel better, or at least not any worse!

 

[Gemini]

One thought.........you are experiencing fluctuations in thyroid levels because you probably aren't absorbing your meds well. That was the case with me and I kept having to increase my dose. After 4 years gluten-free, healing was well under way and all of a sudden, I went hyper.  I started to absorb meds normally and the dose I was on was too high.  That is something you need to keep an eye on for the future.  I don't know what kind of thyroid hormone they have you on but I actually chew mine to dissolve it in my mouth so it starts to absorb immediately.  You may want to check to see if that is possible or if you post what med you are on, I could find out.

I understand your desire to finish school and as it's only a short time to graduation, if you feel you can push through, go for it. Just get ample nutrition and plenty of rest. A PhD in physics is awesome, girl!  You are smart so will do well with this.

The thyroid swelling and feeling of strangling could also be from the dry mouth. If your mouth is dry, your throat is dry.  I have both and cannot swallow bread without liquids. Fact of life so I always have water at the table........and red wine too.  Ha, Ha!  You may also want to use sublingual B12 and D so it will absorb and start to elevate your levels.  Anything to bypass the gut for now will work better.

Remember, you have Celiac and that is all people need to know.  Learn all you can so when they ask questions, you can wow them with info till their heads spin and they won't doubt you. That's one way to shut them up!

[GFinDC]

Hi physicsgirl,

Another possibility for the thyroid issues is Hashimoto's Thyroidits.  Hashi's is an autoimmune attack on the thyroid gland.  It can cause swelling of the thyroid (front/sides of throat area) and some pain and possibly fever feeling around the neck.  There is an antibody test for Hashimoto's.  Hashimoto's seems more common among celiacs especially females.

 

[physicsgirl]

3 minutes ago, GFinDC said:

Hi physicsgirl,

Another possibility for the thyroid issues is Hashimoto's Thyroidits.  Hashi's is an autoimmune attack on the thyroid gland.  It can cause swelling of the thyroid (front/sides of throat area) and some pain and possibly fever feeling around the neck.  There is an antibody test for Hashimoto's.  Hashimoto's seems more common among celiacs especially females.

 

yes, I was diagnosed with hashi's a year ago. My antibodies were crazy high! 30 times the norm. I'm on levothyroxine, and I have to keep increasing the dose. Started at 25mcg last year now I'm at 100mcg. I think Gemini is right about it not absorbing.

[physicsgirl]

That's funny, I do have periods where I'm crazy hyper and I can't stand to take my meds, and those are usually times when I'm feeling good otherwise and carefully gluten free. My endo didn't believe me when I told him! I never thought of chewing the medicine, I may give that a shot!

[GFinDC]

On 2/24/2016 at 10:47 PM, physicsgirl said:

On 2/24/2016 at 10:44 PM, physicsgirl said:

yes, I was diagnosed with hashi's a year ago. My antibodies were crazy high! 30 times the norm. I'm on levothyroxine, and I have to keep increasing the dose. Started at 25mcg last year now I'm at 100mcg. I think Gemini is right about it not absorbing.

That's funny, I do have periods where I'm crazy hyper and I can't stand to take my meds, and those are usually times when I'm feeling good otherwise and carefully gluten free. My endo didn't believe me when I told him! I never thought of chewing the medicine, I may give that a shot!

Oops, right, you said as much in your first paragraph!  Sorry.  From what I understand, Hashi's can cause swings in thyroid hormones.  So people have high thyroid hormone levels sometimes and low levels sometimes.  It's not a static level. At least that's what some people on the forum reported.  It could be the antibody attack against the thyroid fluctuates depending on the amount of gluten eaten, or is somehow related to that.  That would make sense to me anyway, because glutening digestive symptoms can flare up and subside for people too.   So it seems immune responses are not always 100% on all the time.

Some people in the past reported their thyroid symptoms reduced after going gluten-free.  Others said they didn't notice a change.  So going gluten-free may help with your thyroid situation, but may not too.  It sure won't hurt it though!