Newly Gluten Free - Sharing My Experience

[KSMarcuson]

Hi everyone! I am so happy I found this community. Although I haven't contributed to any forums yet, I've read what seems like hundreds of posts and comments regarding your own experiences. It has become glaringly obvious to me that nearly every medical issue I've ever had my entire life has been tied to food sensitivities, with gluten being the most obvious culprit. I am skeptical that gluten is my only issue, as I am still dealing with some annoying yet bearable symptoms. The only two changes I have made in the past few months are 1) eliminating gluten, and 2) taking iron supplements. I've seen incredible improvements in my daily functioning and overall wellbeing from these two changes. I should add that I am 29-year-old woman who doctors basically say is the epitome of health. Considering how I've absolutely horrendous I've felt over the past few years, I tend to disagree.

It all started when I hit puberty. I dealt with extremely heavy periods and awful hormonal issues in high school, including extremely oily skin, extreme moodiness, and cystic acne. Around this time, I started blacking out after eating foods a heavy carb load. If I ate waffles, potatoes, french toast, pancakes, pasta, pizza, etc. I would often black out (essentially faint) just an hour or two later. This happened so many times, I learned to avoid sugary/carby foods altogether. It wasn't until years later that I discovered I was quite iron deficient. After being put on iron supplements, (which wreaked havoc on my gut) I felt almost completely cured of my symptoms which included insomnia, heart palpitations/bounding heart, extreme anxiety and panic, slightly clubbed fingernails, chest pain, shortness of breath, and continued sensitivity to sugar/carbs. I thought, this has been my problem all along! If I start feeling sick again, just start popping some iron pills!

Fast forward 6 years, and I'm dealing with a whole slew of other issues that seemed to be triggered by my first COVID-19 infection in November 2020. The infection was mild, but for months afterwards I dealt with chest pain, chest tightness, shortness of breath, high heartrate, seemingly random sinus flare-ups (my entire head felt like it was being squeezed by The Hulk), throat tightness, random adrenaline rushes, crippling fatigue, and other issues. Absolutely nothing helped these issues. However, after 5-6 months, all of these issues magically vanished, and I had a good ~6 months or so where I was completely symptom-free! I felt fantastic.

Several months before my wedding (winter 2022) I started getting heartburn. I had never had recurrent acid reflux before, and I REALLY didn't want heartburn for my wedding. This went on for a couple months, and it was so severe that it started affecting my sleep. I started to get really worried that this wasn't going to go away, and I did NOT want bad acid reflux during the wedding. So, I decided to go to a GI specialist who decided to do an endoscopy and prescribe omeprazole. She said I had mild esophagitis (no mention of celiac), and the only option was to take omeprazole... forever. I thought that was odd. A healthy, young female suddenly gets acid reflux for no apparent reason, and you don't want to find the root of the problem? You just want to put me on a proton pump inhibitor (PPI) that can cause a slew of long-term complications? (Can you sense my sarcasm?) So, I went on the med, and decided I would stay on it through the wedding so that I for sure wouldn't have acid reflux. That's when sh*t hit the fan.

I had a severe reaction to the omeprazole. Just a few weeks after taking it, I was struck with side effects so bad that I didn't want to be alive anymore. I had severe insomnia, extreme adrenaline rushes that would cause "panic attacks" that would last for DAYS. I'm not kidding. DAYS. At one point, I had to get an ambulance to the ER due to severe dizziness/derealization that I couldn't even drive. It literally felt like I was dying, I didn't know what else to do. The doctor told me omeprazole doesn't cause these issues, and that it's just low potassium. He said I'd feel better after the potassium IV. Shockingly, I did not feel ANY better, and they sent me home with 1 Ativan for anxiety, and a prescription for more potassium. (Note: The Ativan did absolutely nothing to make me feel better, and just made me feel high.) It took about 3 months for me to feel better after being off the omeprazole. THREE MONTHS. Unfortunately, even after all this time, I still did not feel 100% for the wedding. I was still somewhat dizzy, breathless, fatigued, and had heart palpitations/high heartrate, among other issues. Regardless, it was an absolutely wonderful day. The only thing I would've changed is me feeling healthier.

RECENT SYMPTOMS (BEFORE GOING GLUTEN-FREE):

Since winter 2022, I have not felt well. I continued to experience chest tightness, chest pain, shortness of breath, fatigue, sinus tightness, and new symptoms including constant "butterflies" or a "pit" in my stomach, severe insomnia, constant urination (peeing 15 times a day), dry mouth/throat, throat soreness, air hunger, manual breathing (I feel like I can't breathe automatically/naturally), dizziness/clumsiness, weird brain zap episodes (where I feel very dazed/unbalanced for a few seconds at a time and my brain feels like it's vibrating; I really can't explain this one any better), asthma-like symptoms, exercise intolerance, restless limbs, lack of focus, intrusive thoughts, random episodes of depression, panic attacks, tingling sensation in body, face feeling very hot (but not flushed), constant "hunger" pains coupled with loss of appetite, constipation, severe/stabbing pains in my gut before a BM, and rectal bleeding (due to constipation/hard stools). I'm sure there are more symptoms that I am forgetting.

A couple months ago, I was feeling SO horrible that I had my husband drive me to the ER. I thought, if anything, they can do a blood test and see if  have a severe vitamin deficiency. It felt like when I used to be low on iron, but 10x worse. Of course, my blood pressure, oxygen levels, EKG, D-dimer, blood test, etc. all came back normal. They hinted that it's likely stress-related (what all doctors say when they don't know what's wrong) and sent me home. I decided to take matters into my own hands. At this point, I had noticed that after eating certain meals (especially high-carb meals) all the symptoms listed above would start occurring almost immediately. I started journaling, and quickly realized that there were two main culprits here: carbs and gluten. Both my aunt and uncle were diagnosed with celiac, so I figured this a gluten intolerance could be a strong possibility. After just a few days of going gluten-free, my symptoms started disappearing. I couldn't believe it. After over a YEAR of calling off work, lying in bed with my heart racing, getting up 6 times in the night to pee... almost everything just went away. I've been mostly gluten free for a couple months now, with a few slip ups, and feeling better than I have in a year.

As I said in at the beginning of this post, I also started taking iron supplements. I went to the walk-in a few weeks ago to see if my iron level was actually low (since the ER refused to test it), and it came back completely normal. However, my ferritin was low (30 ng/ml), which for some reason the doctor said was normal. I know after a 30-second Google search that this is NOT normal, that it is actually very low, and people are often symptomatic below 100 ng/ml. I believe that the iron supplements have helped with many of my classic/historical iron deficiency symptoms, like shortness of breath, chest pain, and dizziness. However, even after taking supplements for over 2 months, and remaining almost completely gluten free, I am still left with a few symptoms:

REMAINING ISSUES (SINCE GOING GLUTEN-FREE)

Feeling jittery and anxious after eating ANY bread - even gluten free bread!
Air hunger/manual breathing
Pit in stomach/physical anxiety feelings
Insomnia

Honestly, if I could just fix the insomnia, I could live with everything else. The few remaining symptoms are DEFINITELY worse after I accidentally get glutened. Last night was rough, because I ate cookie dough ice cream without thinking. I was up all night with those "anxiety" feelings in my stomach, air hunger/manual breathing, and waking up every hour the ENTIRE night. When this happens, I notice I can finally start getting restful sleep around 5:00 AM, which is just a couple hours before I need to wake up (super convenient). I'm guessing this is because the last meal I ate is finally digested and leaving my system.

I wrote all this out for a few reasons. First, I want to share my experience going gluten-free, so that somebody else might relate to and benefit from my story. Second, I want to know if anyone else has a similar story, or similar symptoms. It's so comforting (and a lot less lonely) to hear from others who relate to my issues. Finally, I am looking for some advice regarding my remaining symptoms. I know that if someone has celiac or gluten intolerance, that they likely have other sensitivities as well. For example, I read that dairy, soy, and corn products can cause a similar reaction. Considering I am still having some difficulties with high-carb foods, even gluten-free bread, I am quite desperate for answers on this. I am sure that continuing my food diary would help, but it would be helpful to know what to look for.

If you've gotten this far (or just skipped to the end), thanks for reading. I'm looking forward to hearing from some of you 😊.

[plumbago]

Your detailed posting reminds us all how complicated the road can be towards diagnosis. You have also absorbed much learning - it's evident from what you wrote.

For sure you should ask a doctor for a celiac panel of tests, however, you will need to be consuming gluten for some time beforehand. Reading over your post, I'm not sure my experience completely resonated with yours. Many of us had more digestive issues related to frequent toileting and diarrhea. And not that you specifically asked, but I would make sure you get thoroughly checked out beyond celiac testing, to include perhaps an A1c test (blood glucose), among others. Your post deserves a more thorough reply, but it's a bit late here, I'm tired :), perhaps others will chime in as well.

Plumbago

 

[trents]

Welcome to the forum, @KSMarcuson!

Nearly all of your symptoms scream of celiac disease and the nutritional deficiencies that accrue from long-term undiagnosed celiac disease. I hope you are not still taking a PPI. They raise gut pH which has a negative effect on nutrient absorption which a celiac whose gut is already damaged doesn't need. It's a double whammy.

The trouble with the typical tests ordered by doctors to check for vitamin and mineral deficiencies is they only measure the levels of the nutrients circulating in the blood rather than what is stored up by the body and/or gets into the body's cells. Your low ferritin is a classic example. Ferritin is an iron storage protein. Another classic example is calcium. Your body will leach calcium from your bones in order to have enough for metabolic needs. That's why so many people who have osteoporosis and osteopenia even though blood level calcium is normal.

Many of your symptoms strike me as being neurological and likely caused by vitamin and mineral deficiencies. We typically suggest to people in your situation to start taking a high potency B vitamin supplement, 5-10k mg. of D3, magnesium citrate or magnesium glycinate (not magnesium oxide) and zinc. Some also would benefit from sublingual B12 on top of the B-complex. All this is in addition to an adult multivitamin. Adult multivitamins just do not have the potency you need to recover from significant deficiencies. Don't worry about toxicity withy the B's. The common forms of B vitamins are all water soluble such that you pee out any excess. Make sure all your supplements are gluten free. Costco's Nature Made and Kirkland Signature brands usually are gluten free and will state so if they are on the packaging or on the label. They are priced well too.

Some of your lingering GI symptoms may be caused by SIBO (Small Bowel Bacterial Overgrowth) or by H.Pylori. These are common gastro intestinal maladies in the celiac community.

 Keep us posted.

[KSMarcuson]

6 hours ago, plumbago said:

Your detailed posting reminds us all how complicated the road can be towards diagnosis. You have also absorbed much learning - it's evident from what you wrote.

For sure you should ask a doctor for a celiac panel of tests, however, you will need to be consuming gluten for some time beforehand. Reading over your post, I'm not sure my experience completely resonated with yours. Many of us had more digestive issues related to frequent toileting and diarrhea. And not that you specifically asked, but I would make sure you get thoroughly checked out beyond celiac testing, to include perhaps an A1c test (blood glucose), among others. Your post deserves a more thorough reply, but it's a bit late here, I'm tired :), perhaps others will chime in as well.

Plumbago

 

Thank you for the reply. I never, ever have diarrhea which is why I've been so skeptical I have actual celiac. I thought about continuing to ingest gluten to get a test, but I feel so horrible when I do, I'd rather just avoid it. Are there ANY tests out there to check for celiac without needing to ingest it before the test? I'm guessing not, but it'd be nice if there was.

I agree that I should get an A1C test. I'll talk to my doctor about this.

[KSMarcuson]

3 hours ago, trents said:

Welcome to the forum, @KSMarcuson!

Nearly all of your symptoms scream of celiac disease and the nutritional deficiencies that accrue from long-term undiagnosed celiac disease. I hope you are not still taking a PPI. They raise gut pH which has a negative effect on nutrient absorption which a celiac whose gut is already damaged doesn't need. It's a double whammy.

The trouble with the typical tests ordered by doctors to check for vitamin and mineral deficiencies is they only measure the levels of the nutrients circulating in the blood rather than what is stored up by the body and/or gets into the body's cells. Your low ferritin is a classic example. Ferritin is an iron storage protein. Another classic example is calcium. Your body will leach calcium from your bones in order to have enough for metabolic needs. That's why so many people who have osteoporosis and osteopenia even though blood level calcium is normal.

Many of your symptoms strike me as being neurological and likely caused by vitamin and mineral deficiencies. We typically suggest to people in your situation to start taking a high potency B vitamin supplement, 5-10k mg. of D3, magnesium citrate or magnesium glycinate (not magnesium oxide) and zinc. Some also would benefit from sublingual B12 on top of the B-complex. All this is in addition to an adult multivitamin. Adult multivitamins just do not have the potency you need to recover from significant deficiencies. Don't worry about toxicity withy the B's. The common forms of B vitamins are all water soluble such that you pee out any excess. Make sure all your supplements are gluten free. Costco's Nature Made and Kirkland Signature brands usually are gluten free and will state so if they are on the packaging or on the label. They are priced well too.

Some of your lingering GI symptoms may be caused by SIBO (Small Bowel Bacterial Overgrowth) or by H.Pylori. These are common gastro intestinal maladies in the celiac community.

 Keep us posted.

Thank you for the reply. I am never taking a PPI again. It was truly the worst experience of my life.

I've been taking magnesium glycinate nightly for a couple years for sleep. As for B12, my blood test showed it was on the high end of normal. I could certainly start taking a high potency B complex for awhile to see if it helps. Thanks for the suggestions.

[plumbago]

10 hours ago, plumbago said:

Your detailed posting reminds us all how complicated the road can be towards diagnosis. You have also absorbed much learning - it's evident from what you wrote.

For sure you should ask a doctor for a celiac panel of tests, however, you will need to be consuming gluten for some time beforehand. Reading over your post, I'm not sure my experience completely resonated with yours. Many of us had more digestive issues related to frequent toileting and diarrhea. And not that you specifically asked, but I would make sure you get thoroughly checked out beyond celiac testing, to include perhaps an A1c test (blood glucose), among others. Your post deserves a more thorough reply, but it's a bit late here, I'm tired :), perhaps others will chime in as well.

Plumbago

 

Good, you will want to try to narrow down the origin of the problem (celiac or diabetes or pre-diabetes). I would also ask your medical provider if they can order you an oral glucose tolerance test and/or a fasting insulin test. Good luck and keep us posted. I see a moderator split your postings for some reason, so I'm not sure if you will get this.

Plumbago

[KSMarcuson]

2 hours ago, plumbago said:

Good, you will want to try to narrow down the origin of the problem (celiac or diabetes or pre-diabetes). I would also ask your medical provider if they can order you an oral glucose tolerance test and/or a fasting insulin test. Good luck and keep us posted. I see a moderator split your postings for some reason, so I'm not sure if you will get this.

Plumbago

Actually, looking at my last two recent blood tests, my sugar has been normal. The doctors have told me this too and confirmed that I do not have have prediabetes or diabetes. I was thinking I'd need further testing to confirm this, but I've gotten tested many times (including two ER visits in the past year) and this was never a concern to doctors. Also, the past two times I've gotten my blood taken, I had just eaten a large meal with plenty of carbs/ So I'm guessing this is not the issue. What's interesting is I've always reacted to high carb meals though. Even while I'm having an "attack," after pricking my finger, my blood sugar has never been high. It is the strangest thing!

[trents]

@KSMarcuson, many celaics do not have diarrhea as a symptom. I was one of them, essentially. We call them "silent" celaics. Unfortunately, many doctors do not consider a diagnosis of celiac disease in the absence of diarrhea because they are operating on outdated information. This is especially true for those who have been out of med school for a long time.

[plumbago]

@KSMarcuson yes, further testing. A fasting blood glucose test is among the least useful tests that exist! This is why I suggest the oral glucose tolerance test. Among a couple of other things, it will tell you about insulin release. (Also why I suggest a fasting insulin test.)

[KSMarcuson]

2 minutes ago, plumbago said:

@KSMarcuson yes, further testing. A fasting blood glucose test is among the least useful tests that exist! This is why I suggest the oral glucose tolerance test. Among a couple of other things, it will tell you about insulin release. (Also why I suggest a fasting insulin test.)

Good to know - thank you for the insight!

[plumbago]

I'm sorry for all you're going through and thanks for keeping on posting here, hopefully you will get some resolution soon. Concurrent with my celiac diagnosis upon endoscopy, I was told I had a hiatal hernia, which is extremely common. My personal feeling is that this is partially what contributes to my occasional GERD.

Re-reading your original post now, the only other thing I'd add is if you want to get your palpitations/racing heart rate checked out, you can try to get an appt with a cardiologist to see if he/she would Rx a Zio patch which you normally where for about a week, and it sends the cardiac data back to the doctor. Very useful. But, since most of your labs and vitals are always normal, it may be a challenge to convince them.

Edited December 5, 2023 by plumbago

[KSMarcuson]

4 minutes ago, plumbago said:

I'm sorry for all you're going through and thanks for keeping on posting here, hopefully you will get some resolution soon. Concurrent with my celiac diagnosis upon endoscopy, I was told I had a hiatal hernia, which is extremely common. My personal feeling is that this is partially what contributes to my occasional GERD.

For sure, I'm definitely staying active on this forum. Even if I have other problems besides just gluten intolerance (which I'm guessing I do), I feel like this is such a helpful and supportive community to get answers. I don't understand why doctors are so dismissive and unhelpful. Fun fact, I had an endoscopy too, due to acid reflux issues last year (which magically disappeared). Surprisingly enough, I did not have a hiatal hernia.

[trents]

42 minutes ago, plumbago said:

@KSMarcuson yes, further testing. A fasting blood glucose test is among the least useful tests that exist! This is why I suggest the oral glucose tolerance test. Among a couple of other things, it will tell you about insulin release. (Also why I suggest a fasting insulin test.)

Plumbago, are you suggesting that both fasting and oral glucose tolerance tests be done?

Edited December 5, 2023 by trents

[plumbago]

I think given what the OP has stated, she likely has some form of gluten intolerance, but given her symptoms after eating a high carb meal or snack, the OGTT and fasting insulin tests are likely more useful than a fasting blood glucose in terms of checking out problems with blood glucose regulation. The OGTT used to be done much more frequently than now.

[Wheatwacked]

In high school after lunch my whole body would vibrate and I'd black out, eyes open for about 10 minutes.  Never got caught, but it did mess with tests when it happened during a test.  If the teacher was reading the question, I even managed to mark down answers.  I went out in the middle of the PSATs. Only finished 25 of 50 questions and woke up when time was called.  Thought it was narcolepsy and learned to deal with it.  That continued until gluten free.  Always had more energy before eating than after so I often skipped meals.  Ah, the good old days.

Welcome to the forum.

[Raquel2021]

20 hours ago, KSMarcuson said:

Hi everyone! I am so happy I found this community. Although I haven't contributed to any forums yet, I've read what seems like hundreds of posts and comments regarding your own experiences. It has become glaringly obvious to me that nearly every medical issue I've ever had my entire life has been tied to food sensitivities, with gluten being the most obvious culprit. I am skeptical that gluten is my only issue, as I am still dealing with some annoying yet bearable symptoms. The only two changes I have made in the past few months are 1) eliminating gluten, and 2) taking iron supplements. I've seen incredible improvements in my daily functioning and overall wellbeing from these two changes. I should add that I am 29-year-old woman who doctors basically say is the epitome of health. Considering how I've absolutely horrendous I've felt over the past few years, I tend to disagree.

It all started when I hit puberty. I dealt with extremely heavy periods and awful hormonal issues in high school, including extremely oily skin, extreme moodiness, and cystic acne. Around this time, I started blacking out after eating foods a heavy carb load. If I ate waffles, potatoes, french toast, pancakes, pasta, pizza, etc. I would often black out (essentially faint) just an hour or two later. This happened so many times, I learned to avoid sugary/carby foods altogether. It wasn't until years later that I discovered I was quite iron deficient. After being put on iron supplements, (which wreaked havoc on my gut) I felt almost completely cured of my symptoms which included insomnia, heart palpitations/bounding heart, extreme anxiety and panic, slightly clubbed fingernails, chest pain, shortness of breath, and continued sensitivity to sugar/carbs. I thought, this has been my problem all along! If I start feeling sick again, just start popping some iron pills!

Fast forward 6 years, and I'm dealing with a whole slew of other issues that seemed to be triggered by my first COVID-19 infection in November 2020. The infection was mild, but for months afterwards I dealt with chest pain, chest tightness, shortness of breath, high heartrate, seemingly random sinus flare-ups (my entire head felt like it was being squeezed by The Hulk), throat tightness, random adrenaline rushes, crippling fatigue, and other issues. Absolutely nothing helped these issues. However, after 5-6 months, all of these issues magically vanished, and I had a good ~6 months or so where I was completely symptom-free! I felt fantastic.

Several months before my wedding (winter 2022) I started getting heartburn. I had never had recurrent acid reflux before, and I REALLY didn't want heartburn for my wedding. This went on for a couple months, and it was so severe that it started affecting my sleep. I started to get really worried that this wasn't going to go away, and I did NOT want bad acid reflux during the wedding. So, I decided to go to a GI specialist who decided to do an endoscopy and prescribe omeprazole. She said I had mild esophagitis (no mention of celiac), and the only option was to take omeprazole... forever. I thought that was odd. A healthy, young female suddenly gets acid reflux for no apparent reason, and you don't want to find the root of the problem? You just want to put me on a proton pump inhibitor (PPI) that can cause a slew of long-term complications? (Can you sense my sarcasm?) So, I went on the med, and decided I would stay on it through the wedding so that I for sure wouldn't have acid reflux. That's when sh*t hit the fan.

I had a severe reaction to the omeprazole. Just a few weeks after taking it, I was struck with side effects so bad that I didn't want to be alive anymore. I had severe insomnia, extreme adrenaline rushes that would cause "panic attacks" that would last for DAYS. I'm not kidding. DAYS. At one point, I had to get an ambulance to the ER due to severe dizziness/derealization that I couldn't even drive. It literally felt like I was dying, I didn't know what else to do. The doctor told me omeprazole doesn't cause these issues, and that it's just low potassium. He said I'd feel better after the potassium IV. Shockingly, I did not feel ANY better, and they sent me home with 1 Ativan for anxiety, and a prescription for more potassium. (Note: The Ativan did absolutely nothing to make me feel better, and just made me feel high.) It took about 3 months for me to feel better after being off the omeprazole. THREE MONTHS. Unfortunately, even after all this time, I still did not feel 100% for the wedding. I was still somewhat dizzy, breathless, fatigued, and had heart palpitations/high heartrate, among other issues. Regardless, it was an absolutely wonderful day. The only thing I would've changed is me feeling healthier.

RECENT SYMPTOMS (BEFORE GOING GLUTEN-FREE):

Since winter 2022, I have not felt well. I continued to experience chest tightness, chest pain, shortness of breath, fatigue, sinus tightness, and new symptoms including constant "butterflies" or a "pit" in my stomach, severe insomnia, constant urination (peeing 15 times a day), dry mouth/throat, throat soreness, air hunger, manual breathing (I feel like I can't breathe automatically/naturally), dizziness/clumsiness, weird brain zap episodes (where I feel very dazed/unbalanced for a few seconds at a time and my brain feels like it's vibrating; I really can't explain this one any better), asthma-like symptoms, exercise intolerance, restless limbs, lack of focus, intrusive thoughts, random episodes of depression, panic attacks, tingling sensation in body, face feeling very hot (but not flushed), constant "hunger" pains coupled with loss of appetite, constipation, severe/stabbing pains in my gut before a BM, and rectal bleeding (due to constipation/hard stools). I'm sure there are more symptoms that I am forgetting.

A couple months ago, I was feeling SO horrible that I had my husband drive me to the ER. I thought, if anything, they can do a blood test and see if  have a severe vitamin deficiency. It felt like when I used to be low on iron, but 10x worse. Of course, my blood pressure, oxygen levels, EKG, D-dimer, blood test, etc. all came back normal. They hinted that it's likely stress-related (what all doctors say when they don't know what's wrong) and sent me home. I decided to take matters into my own hands. At this point, I had noticed that after eating certain meals (especially high-carb meals) all the symptoms listed above would start occurring almost immediately. I started journaling, and quickly realized that there were two main culprits here: carbs and gluten. Both my aunt and uncle were diagnosed with celiac, so I figured this a gluten intolerance could be a strong possibility. After just a few days of going gluten-free, my symptoms started disappearing. I couldn't believe it. After over a YEAR of calling off work, lying in bed with my heart racing, getting up 6 times in the night to pee... almost everything just went away. I've been mostly gluten free for a couple months now, with a few slip ups, and feeling better than I have in a year.

As I said in at the beginning of this post, I also started taking iron supplements. I went to the walk-in a few weeks ago to see if my iron level was actually low (since the ER refused to test it), and it came back completely normal. However, my ferritin was low (30 ng/ml), which for some reason the doctor said was normal. I know after a 30-second Google search that this is NOT normal, that it is actually very low, and people are often symptomatic below 100 ng/ml. I believe that the iron supplements have helped with many of my classic/historical iron deficiency symptoms, like shortness of breath, chest pain, and dizziness. However, even after taking supplements for over 2 months, and remaining almost completely gluten free, I am still left with a few symptoms:

REMAINING ISSUES (SINCE GOING GLUTEN-FREE)

Feeling jittery and anxious after eating ANY bread - even gluten free bread!
Air hunger/manual breathing
Pit in stomach/physical anxiety feelings
Insomnia

Honestly, if I could just fix the insomnia, I could live with everything else. The few remaining symptoms are DEFINITELY worse after I accidentally get glutened. Last night was rough, because I ate cookie dough ice cream without thinking. I was up all night with those "anxiety" feelings in my stomach, air hunger/manual breathing, and waking up every hour the ENTIRE night. When this happens, I notice I can finally start getting restful sleep around 5:00 AM, which is just a couple hours before I need to wake up (super convenient). I'm guessing this is because the last meal I ate is finally digested and leaving my system.

I wrote all this out for a few reasons. First, I want to share my experience going gluten-free, so that somebody else might relate to and benefit from my story. Second, I want to know if anyone else has a similar story, or similar symptoms. It's so comforting (and a lot less lonely) to hear from others who relate to my issues. Finally, I am looking for some advice regarding my remaining symptoms. I know that if someone has celiac or gluten intolerance, that they likely have other sensitivities as well. For example, I read that dairy, soy, and corn products can cause a similar reaction. Considering I am still having some difficulties with high-carb foods, even gluten-free bread, I am quite desperate for answers on this. I am sure that continuing my food diary would help, but it would be helpful to know what to look for.

If you've gotten this far (or just skipped to the end), thanks for reading. I'm looking forward to hearing from some of you 😊.

My iron has been low for years. My ferritin has always being 5. Now that I take iron supplements is 11 so 30 is low but it can be worse. Take a sublingual b12. I also never had diarrhea.  Just excruciating pain on the left side of my upper stomach along for other random symptoms Just like you. You should be tested for celiac disease since it runs in your family.  Also follow a non processed food diet such as the Paleo diet or Aip diet. So basically a ton of vegetables specially cruciferous vegetables and proteins. Grass fed meat, chicken, fish etc. This should help with the insomnia.  I also cannot tolerate sugar at all and a few carbs. So just eat a few fruits a day or I will get crazy insomnia.  Eliminating dairy is also beneficial.  

[KSMarcuson]

1 hour ago, Raquel2021 said:

My iron has been low for years. My ferritin has always being 5. Now that I take iron supplements is 11 so 30 is low but it can be worse. Take a sublingual b12. I also never had diarrhea.  Just excruciating pain on the left side of my upper stomach along for other random symptoms Just like you. You should be tested for celiac disease since it runs in your family.  Also follow a non processed food diet such as the Paleo diet or Aip diet. So basically a ton of vegetables specially cruciferous vegetables and proteins. Grass fed meat, chicken, fish etc. This should help with the insomnia.  I also cannot tolerate sugar at all and a few carbs. So just eat a few fruits a day or I will get crazy insomnia.  Eliminating dairy is also beneficial.  

Wow, I wish you the best getting your iron up! I've heard great things about Dr. Wholeness's Blood Vitality. Although it's somewhat pricey. I've been taking it for a few weeks now, and I'll be getting my ferritin tested again in a few weeks. I'll try to remember to report back with how it went. I'm hoping it went up to at least 40 ng/ml but we'll see. And yes I'm actually in the process of preparing to do a modified carnivore diet for awhile (basically Paleo), so that it's basically an elimination diet. I'll introduce other foods as time goes on to see if I have a reaction. It's gonna be hard not eating many carbs, but I know it'll help me. 

1 hour ago, Wheatwacked said:

In high school after lunch my whole body would vibrate and I'd black out, eyes open for about 10 minutes.  Never got caught, but it did mess with tests when it happened during a test.  If the teacher was reading the question, I even managed to mark down answers.  I went out in the middle of the PSATs. Only finished 25 of 50 questions and woke up when time was called.  Thought it was narcolepsy and learned to deal with it.  That continued until gluten free.  Always had more energy before eating than after so I often skipped meals.  Ah, the good old days.

Welcome to the forum.

WOW, this sounds like me but worse! It's absolutely crazy what gluten can do to people. I actually just listened to a podcast where there are links to schizophrenia with gluten. I believe it, I've heard of people having straight up hallucinations from celiac. So awful but fascinating. I wish doctors knew more.

[plumbago]

2 hours ago, Wheatwacked said:

Always had more energy before eating than after

This resonates with me, sometimes not always. Perhaps it relates to how much good sleep we are getting, as well.

[Always-Hungry-Kate]

On 12/4/2023 at 9:39 PM, KSMarcuson said:

Hi everyone! I am so happy I found this community. Although I haven't contributed to any forums yet, I've read what seems like hundreds of posts and comments regarding your own experiences. It has become glaringly obvious to me that nearly every medical issue I've ever had my entire life has been tied to food sensitivities, with gluten being the most obvious culprit. I am skeptical that gluten is my only issue, as I am still dealing with some annoying yet bearable symptoms. The only two changes I have made in the past few months are 1) eliminating gluten, and 2) taking iron supplements. I've seen incredible improvements in my daily functioning and overall wellbeing from these two changes. I should add that I am 29-year-old woman who doctors basically say is the epitome of health. Considering how I've absolutely horrendous I've felt over the past few years, I tend to disagree.

It all started when I hit puberty. I dealt with extremely heavy periods and awful hormonal issues in high school, including extremely oily skin, extreme moodiness, and cystic acne. Around this time, I started blacking out after eating foods a heavy carb load. If I ate waffles, potatoes, french toast, pancakes, pasta, pizza, etc. I would often black out (essentially faint) just an hour or two later. This happened so many times, I learned to avoid sugary/carby foods altogether. It wasn't until years later that I discovered I was quite iron deficient. After being put on iron supplements, (which wreaked havoc on my gut) I felt almost completely cured of my symptoms which included insomnia, heart palpitations/bounding heart, extreme anxiety and panic, slightly clubbed fingernails, chest pain, shortness of breath, and continued sensitivity to sugar/carbs. I thought, this has been my problem all along! If I start feeling sick again, just start popping some iron pills!

Fast forward 6 years, and I'm dealing with a whole slew of other issues that seemed to be triggered by my first COVID-19 infection in November 2020. The infection was mild, but for months afterwards I dealt with chest pain, chest tightness, shortness of breath, high heartrate, seemingly random sinus flare-ups (my entire head felt like it was being squeezed by The Hulk), throat tightness, random adrenaline rushes, crippling fatigue, and other issues. Absolutely nothing helped these issues. However, after 5-6 months, all of these issues magically vanished, and I had a good ~6 months or so where I was completely symptom-free! I felt fantastic.

Several months before my wedding (winter 2022) I started getting heartburn. I had never had recurrent acid reflux before, and I REALLY didn't want heartburn for my wedding. This went on for a couple months, and it was so severe that it started affecting my sleep. I started to get really worried that this wasn't going to go away, and I did NOT want bad acid reflux during the wedding. So, I decided to go to a GI specialist who decided to do an endoscopy and prescribe omeprazole. She said I had mild esophagitis (no mention of celiac), and the only option was to take omeprazole... forever. I thought that was odd. A healthy, young female suddenly gets acid reflux for no apparent reason, and you don't want to find the root of the problem? You just want to put me on a proton pump inhibitor (PPI) that can cause a slew of long-term complications? (Can you sense my sarcasm?) So, I went on the med, and decided I would stay on it through the wedding so that I for sure wouldn't have acid reflux. That's when sh*t hit the fan.

I had a severe reaction to the omeprazole. Just a few weeks after taking it, I was struck with side effects so bad that I didn't want to be alive anymore. I had severe insomnia, extreme adrenaline rushes that would cause "panic attacks" that would last for DAYS. I'm not kidding. DAYS. At one point, I had to get an ambulance to the ER due to severe dizziness/derealization that I couldn't even drive. It literally felt like I was dying, I didn't know what else to do. The doctor told me omeprazole doesn't cause these issues, and that it's just low potassium. He said I'd feel better after the potassium IV. Shockingly, I did not feel ANY better, and they sent me home with 1 Ativan for anxiety, and a prescription for more potassium. (Note: The Ativan did absolutely nothing to make me feel better, and just made me feel high.) It took about 3 months for me to feel better after being off the omeprazole. THREE MONTHS. Unfortunately, even after all this time, I still did not feel 100% for the wedding. I was still somewhat dizzy, breathless, fatigued, and had heart palpitations/high heartrate, among other issues. Regardless, it was an absolutely wonderful day. The only thing I would've changed is me feeling healthier.

RECENT SYMPTOMS (BEFORE GOING GLUTEN-FREE):

Since winter 2022, I have not felt well. I continued to experience chest tightness, chest pain, shortness of breath, fatigue, sinus tightness, and new symptoms including constant "butterflies" or a "pit" in my stomach, severe insomnia, constant urination (peeing 15 times a day), dry mouth/throat, throat soreness, air hunger, manual breathing (I feel like I can't breathe automatically/naturally), dizziness/clumsiness, weird brain zap episodes (where I feel very dazed/unbalanced for a few seconds at a time and my brain feels like it's vibrating; I really can't explain this one any better), asthma-like symptoms, exercise intolerance, restless limbs, lack of focus, intrusive thoughts, random episodes of depression, panic attacks, tingling sensation in body, face feeling very hot (but not flushed), constant "hunger" pains coupled with loss of appetite, constipation, severe/stabbing pains in my gut before a BM, and rectal bleeding (due to constipation/hard stools). I'm sure there are more symptoms that I am forgetting.

A couple months ago, I was feeling SO horrible that I had my husband drive me to the ER. I thought, if anything, they can do a blood test and see if  have a severe vitamin deficiency. It felt like when I used to be low on iron, but 10x worse. Of course, my blood pressure, oxygen levels, EKG, D-dimer, blood test, etc. all came back normal. They hinted that it's likely stress-related (what all doctors say when they don't know what's wrong) and sent me home. I decided to take matters into my own hands. At this point, I had noticed that after eating certain meals (especially high-carb meals) all the symptoms listed above would start occurring almost immediately. I started journaling, and quickly realized that there were two main culprits here: carbs and gluten. Both my aunt and uncle were diagnosed with celiac, so I figured this a gluten intolerance could be a strong possibility. After just a few days of going gluten-free, my symptoms started disappearing. I couldn't believe it. After over a YEAR of calling off work, lying in bed with my heart racing, getting up 6 times in the night to pee... almost everything just went away. I've been mostly gluten free for a couple months now, with a few slip ups, and feeling better than I have in a year.

As I said in at the beginning of this post, I also started taking iron supplements. I went to the walk-in a few weeks ago to see if my iron level was actually low (since the ER refused to test it), and it came back completely normal. However, my ferritin was low (30 ng/ml), which for some reason the doctor said was normal. I know after a 30-second Google search that this is NOT normal, that it is actually very low, and people are often symptomatic below 100 ng/ml. I believe that the iron supplements have helped with many of my classic/historical iron deficiency symptoms, like shortness of breath, chest pain, and dizziness. However, even after taking supplements for over 2 months, and remaining almost completely gluten free, I am still left with a few symptoms:

REMAINING ISSUES (SINCE GOING GLUTEN-FREE)

Feeling jittery and anxious after eating ANY bread - even gluten free bread!
Air hunger/manual breathing
Pit in stomach/physical anxiety feelings
Insomnia

Honestly, if I could just fix the insomnia, I could live with everything else. The few remaining symptoms are DEFINITELY worse after I accidentally get glutened. Last night was rough, because I ate cookie dough ice cream without thinking. I was up all night with those "anxiety" feelings in my stomach, air hunger/manual breathing, and waking up every hour the ENTIRE night. When this happens, I notice I can finally start getting restful sleep around 5:00 AM, which is just a couple hours before I need to wake up (super convenient). I'm guessing this is because the last meal I ate is finally digested and leaving my system.

I wrote all this out for a few reasons. First, I want to share my experience going gluten-free, so that somebody else might relate to and benefit from my story. Second, I want to know if anyone else has a similar story, or similar symptoms. It's so comforting (and a lot less lonely) to hear from others who relate to my issues. Finally, I am looking for some advice regarding my remaining symptoms. I know that if someone has celiac or gluten intolerance, that they likely have other sensitivities as well. For example, I read that dairy, soy, and corn products can cause a similar reaction. Considering I am still having some difficulties with high-carb foods, even gluten-free bread, I am quite desperate for answers on this. I am sure that continuing my food diary would help, but it would be helpful to know what to look for.

If you've gotten this far (or just skipped to the end), thanks for reading. I'm looking forward to hearing from some of you 😊.

Oh-my-gosh, your story meant so much to me!  Please know that I completely understand what you went through, because I just started this journey in late October of this year -- after going DECADES undiagnosed.  

I am so glad I joined this group -- I just joined today, actually because I know I do NOT need a therapist or psychiatrist as my last doctor suggested.  I need a SUPPORT group like this one.  The one I joined on another social media platform has also been very helpful, but not as much as this site has been.  

My (recent) Back Story:  I was just diagnosed with Celiac Disease on 22-Oct-2023.  Already had an endoscopy confirming it.  No question.  I now have a Gastroenterologist.  Never had one before.  After starting a gluten-free diet on 22-Oct -- when I got the lab results -- I have been feeling as if I am STARVING for a number of hours a day.  Severe hunger pangs -- especially after I wake-up, it is ridiculous!  It takes a LOT of food to make me feel satisfied . . . and then, after eating so much at one time, I often feel nauseous.  I am now finding out that this is all part of it. 

Already met with a registered Dietician.  Told him what I'm eating, and he said it all sounded good -- "keep up the good work".   Of course, I've also been to a number of doctors in the last month-and-a-half.  Very discouraging because they keep referring me to therapists and even psychiatrists to deal with my hunger and nausea, which has not been helpful!  So, I just joined this group, since I am already a member of Facebook Celiac group which HAS been very helpful for me.  It's been the most help I've gotten since this horrible journey started. 

I just wanted to add to this thread and say, "Yep, it's been almost 2 months since I went gluten-free and I am waking up during the night starving -- even after I've had a bowl of soup or a protein bar with milk or hot tea."  I also feel quite anxious -- especially when relatively-far away from home or places where gluten-free options are unavailable or not as available.  How sad that I keep being told I should go on an anti-depressant to deal with how I'm physically feeling.  I am NOT clinically depressed!  I am having a hard time dealing with my nervous stomach and this terrible condition!  That's it!

Anyway, just had to chime-in.  This has been terrible and I am looking for any support I can get from other Celiac patients.