Everything seems to point to Celiac Disease but they will not diagnosis me as such

[BridgetRA]

Hello!!  

Hoping this group can help me!  This past year I have been dealing with an extreme case of GERD, not typical heartburn it actually felt like I was having a heart attack.  I have also been have SVT episodes, where my heart rate goes so high for no reason.  I have had EKGs and wore a monitor.   Monitor did show SVT episodes but I reacted so horribly to the beta blocker that we agreed for me to try to control it on my own.  Did two rounds of omeprazole, first round did help as I was finally able to sleep as the tightness in my chest let up.  But then after I started to have more traditional GERD symptoms and still having sporadic chest pain so they did the second round of the omeprazole.   Which really didn't help.   Now I refuse to go back on the omeprazole but still have GERD issues.   For about month+ I went gluten free and I was feeling good so I also cut out dairy too, and really noticed my GERD issues decreasing.   But then at Christmas I ate like crap and my GERD issue came back right away.   So in January I did the whole30 which really helped but then I was diagnosed with Melanoma which really knocked me down it was such a random find when I went in for skin rash issues.  I had surgery and still really in the recovery phase right now luckily it was stage 1 (Melanoma starts at stage 0).   My Melanoma is on my calf muscle so I really haven't been able to do much walking/standing so during this time I definitely have eaten a good amount of Gluten and my GERD came back so strong with the chest pain too and now I am having the high heart rate again.  I went to the doctor again about it as I really nervous with having the cancerous tumor and never ending GERD issues that I really do have a Gluten issue.  My doctor can really give me a hard time I had to beg her for the testing as she said most autoimmune results give a false positive.   But my mother has Celiac Disease it is really bad, so bad that many years ago she was misdiagnosed and treated for Parkin's disease.  And I have been tested and do have the gene for Celiac Disease.  But the doctor said these results showed I didn't have Celiac Disease:

• TTG IGA Antibody- 7.15
•  IGA Serum- 398 mg/dL

But during this time I have had some blood results come back with warnings that are showing some inflammation and issues:

• C Reactive Protein Cardio - CRP Cardio - 5.6
• Vitamin B12- 177 pg/mL (just recently tested for this, no clue why they didn't do this early one with high heart rate)
• Lymphocytes- 24.9 
• Eosinophils 0.6

They did test my TSH which is fine at 1.04 and my Vitamin D (136 ng/mL) is actually too high as I was taken a high amount due to a previous deficiency.  They haven't tested my red blood cells only did a basic hemogram.   When I got the low B12 I pressed her about gluten again as did have improvements when I was off of it so she is finally sending me to a Gastrologist but he is part of the same practice that really just seems to want to treat the symptoms.  

 I will do whatever is needed to stop the heart rate issues and GERD.  I am in week 1 of being gluten free again and noticing that I am able to swallow better.  Normally I cannot swallow even a small pill.  I still have postal nasal drip with throat clearing (and a feeling of something in my throat with chest tightness).  I am taking the following:

• Zyrtec (taking for about two years now as initially they said this was allergies but it does help with the GERD)
• Flonase (same as above about two to three years just a little longer)
• Had always taken a gummy multi vitamin (which obviously wasn't doing anything so I have stopped)
• Take Vitamin D3/K2 dropper (5,000 IU a day- cutting that down in half due to high test result)
• Just started this week B- Complex with Riboflavin, Niacin, Vitamin B-6, Vit B-12 (as Cyanocobalamin) and Pantothenic Acid
• Going to alternate with multi that I can finally start swallowing that has all of the same vitamins as above plus more and the Vitamin B-12 (as methylcobalamin)
• Going to start Magnesium Glycinate (pill is huge so holding a couple more days as I always gag hoping my throat will continue to get better)

Is there anything else I should be taking?   Is there any tests I should insist on them doing?  I refuse to start eating gluten as I know physically it is not agreeing with me and it seems to get worse every time I go off and back on again.  My husband and others think I am crazy so in some ways I just want to prove to them that gluten is affecting me.   Will my throat issues go away?  I am only 42 with kids.  

Appreciate any advice or shared knowledge of your journey. 

[BridgetRA]

Also should note, I am not a vegan at all.  I do eat meat and always fish and shellfish each week.  I always have salmon weekly and shellfish (shrimp or oysters) weekly.   So really the low B12 is throwing me which is why I thought it was related to gluten seeing that I have the gene for it. 

[trents]

Bridget,

The lab values you posted are not helpful because they don't contain reference values. We would need to know what is the threshold value for being positive for each of those tests. Different labs use different reference values. If you don't have celiac disease you may still be gluten sensitive. The symptoms are largely the same. The difference is that celiac disease causes damage to the villi of t he small bowel whereas gluten sensitivity does not. But in both cases the antidote is the same: total avoidance of gluten. Having said that, it is not all that unusual for people who really do have celiac disease to have negative blood work. If you are not satisfied with the support you are getting from your physicians, there are also home test kits available for about $100 USD: https://www.imaware.health/at-home-blood-test/celiac-disease-screening

A "full" celiac disease blood work panel is described here. It includes the "other tests" described. Some of the tests are more specific for celiac disease but less sensitive and some are more sensitive but less specific: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

The second stage of celiac disease diagnosis is an endoscopy with biopsy of the small bowel lining. But please hear this: You must be eating gluten daily for 6-8 weeks before the blood test and at least two weeks before the endoscopy/biopsy for the test results to be valid. So if you had eliminated gluten before the  testing you did have done that could explain the negative results. And any future testing would require you to go back on gluten for a period of weeks.

You are heading in the right direction with vitamins and supplements. If you have issues swallowing the pills, consider crushing them into a powder and mixing with water.

Sounds like your esophagus is raw. It might be wise to use the GERD meds until that is back under control. But I certainly don't recommend them long term unless, perhaps, you have a hiatal hernia and the sphincter just isn't sealing well.

[Scott Adams]

Welcome to the forum! Yes, it would be great if you can provide us with the cut off marker for your TTG test. That would give us more information about where you stand with regard to possibly having celiac disease.

[BridgetRA]

Thank you both for taking the time to write back to me!!

Sorry didn't include them as I had read that the reference ranges are based on the average population with the majority of the population being overweight and having a disease made these reference ranges questionable.   I have never in the past questioned any results as most blood test have ranges that follow the standard range that other clinics use.  But really starting to question the specific ones related to Celiac disease at the practice I go to, as I do see other people getting diagnosed with lower ranges.  And my doctor didn't tell me that i needed to eat gluten regularly for 6 weeks before taking the test, I don't usually eat much even when i was having it so who knows how accurate my results even were.   And really I would have accepted the results and been fine with it and moved on but I cut out gluten and noticed a huge difference.   And it is not like I am eating a lower acidic diet or healthier food when I go gluten free.  I was actually intentional with that on this go around of going gluten free as I wanted to see if it was really the gluten helping.  

TTG IGA antibody at 7.15, according to the practice I go to says standard range is under <20 (but MayoClinic says it should be under 4 and that a weak positive is 4-10 which would put me at a positive) Quests ranges were the same as Mayo

IGA serum at 398, according to the practice I go to says standard range is 82 to 453 (but MayoClinic says it should be under 356 which would put me at a positive)  Quests ranges were the same as Mayo

My issue are with the reference range that my practice is using, I am not looking to do unnecessary damage if I am really having an issue.   She refused anymore testing for me, not sure if the gastrologist will be better.  She just wants me to pop pills, not against pills but only when it is the right option.  The omeprazole is only making it worse at this point, first time it was helpful but it is no longer helpful and making things worse.  Seems like a lot of what I read is that we get so far along in damage that it becomes so much harder to reverse the damage.    My GERD is so painful and I have heart issues so having chest pains makes a huge impact to my way of life.  

Considering my doctor was unwilling to test me properly back then and there is no way I can go back to eating Gluten as last month of eating Gluten made me feel so horrible.  So six to eight weeks would be unbearable.  So it sounds like I will never get a diagnosis as really everything requires you to be eating it for like two months.  Also beyond my mother having Celiac every single one of my aunts have it and then I tested positive for the gene.

Appreciate you taking the time to write back, please don't take my disappointment as directed to you.  My disappointment is really for the current process of diagnosing it.   Sounds like I can just look at it as gluten sensitivity and really just move forward with this.  Hopefully gastrologist will be aligned with this, I can deal without knowing for sure.   I just don't want to do anymore damage.    

[trents]

Bridget, about 10% of celiacs react to oat protein the same way they do gluten in wheat, barley and rye. And many celiacs find that the protein casein in dairy products causes inflammation of the gut much like gluten does. We often advise people who are just beginning the journey of eating gluten free to eliminate those two foods along with wheat, barley and rye - at least until there is good healing and then try adding one, then the other back in.

[BridgetRA]

6 minutes ago, trents said:

Bridget, about 10% of celiacs react to oat protein the same way they do gluten in wheat, barley and rye. And many celiacs find that the protein casein in dairy products causes inflammation of the gut much like gluten does. We often advise people who are just beginning the journey of eating gluten free to eliminate those two foods along with wheat, barley and rye - at least until there is good healing and then try adding one, then the other back in.

Thank you Trent!! I will eliminate Oats too, to see if that helps as well.  I am lactose intolerant so I try to not have much diary as it is but I will pay more attention so I completely eliminate it.  In the past it has always been help for me to eliminate diary. 

[MindnumbMama]

 

I can respond just to the GERD aspect of what you're dealing with. I've had acid reflux (confirmed by a barium swallow) since I was a child, I'm almost 40 now. I took tums as needed until my 20's when my symptoms became daily. Then I was put on Nexium (omeprazole) for a few years (this was before they realized daily PPI's will actually increase your acid production), and I did really well on that. When I stopped taking Nexium daily and switched to Zantac I did well on that too. Between my mid 20's and mid 30's I was able to go on and off a daily med based on my symptoms. Some years I only took daily meds 2-3 months out of the year, other years I took them 7-9 months out of the year. 

I've had 3 endoscopy's in my life. My last one, in my early 30's, showed I had developed a mild-moderate hiatal hernia. I began daily Zantac at that point again and switched to Pepcid when Zantac was recalled. My symptoms stayed fairly stable for a couple years. Then over the last 5 years, my hernia symptoms have gotten much, much worse. On top of daily Pepcid I'm now taking hyoscyamine too often for severe and painful hiatal hernia attacks. I'm at the point where need to have my hernia repaired ASAP. I'm just looking for a new GI to do it.

But the reason I explained ALL this is just to give you an idea of what living with GERD can look like. If I were you I would suggest focusing more on that aspect of your issue and treat it. Because all the symptoms you described are classic GERD symptoms, and one or two rounds of omeprazole won't necessarily get rid of that for you. 

Even if your doctor did diagnose you with celiac what would that do for your symptoms? Since you're unable to eat gluten in order to see your true baseline and confirm a celiac diagnosis with biopsy, why not just eat 100% gluten free and see if that fixes your GERD? Chances are you have 2 things going on; some level of gluten intolerance (probably celiac based on family history) and GERD. Diet can help GERD inflammation and symptoms greatly based on the person. But in many, many cases daily meds are unavoidable. For many, if not most, GERD can be a lifetime affliction that will ebb and flow like most other things in like.

Sorry you're having such a hard time, I hope this helps a little!

Good luck!!

M 

[knitty kitty]

Prescription drugs such as Omeprazole, Zantac, and Flonase will suppress your body's production of antibodies.  When you test for Celiac Disease after taking any of these medications, you will get false negatives.  

Omeprazole is known to cause B12 deficiency.  Omeprazole inhibits absorption of B12.

Since you know you have one Celiac gene, and you know gluten causes adverse reactions, can you and your doctors accept that as proof of Celiac Disease?  

The SVT, heart palpitations, can be a symptom of Thiamine deficiency.  Chemotherapy causes thiamine deficiency.  Talk to your doctor about high dose thiamine supplementation. 

Other symptoms of thiamine deficiency include Gerd and acid reflux.  Thiamine deficiency is also connected with hernias and swallowing problems like you describe.  Thiamine deficiency affects the Vagus nerve which controls your throat, swallowing and the sphincter to your stomach.  If that stomach sphincter isn't working properly, it may be thiamine deficiency.

Thiamine and magnesium work together.  You might want to try a liquid form of magnesium like Calm by Natural Vitality.  Most of those magnesium pills are wicked big.

You may want to ban shellfish from your diet for a while.  Not only does shellfish have enzymes that destroy thiamine, but shellfish has lots of iodine.  Iodine can trigger and worsen Dermatitis Herpetiformis, a rash that is definitively a confirmation of Celiac.  If you can get a positive diagnosis of DH, you've got your Celiac diagnosis.  

Hope this helps!

[GFinDC]

Hi Bridget,

Since you have a high level of vitamin D I think you should correct that issue.  Vitamin D is stored in fat so it doesn't wash out of the body like B vitamins do.  Oily fish has vitamin D in it, so you may be getting all you need from the fish in your diet for now.  I suggest you stop all vitamin D supplements now until your levels are back in a normal range.  Myself I have the opposite problem and tend to being low on vitamin D.

Celiac disease impairs the absorption of nutrients and that can cause various symptoms and problems.  Nerve problems are possible if B vitamins are too low.  I have trouble swallowing probably due to B vitamin or D deficiency in the past.

https://www.verywellmind.com/symptoms-of-too-much-vitamin-d-5105134

https://www.livestrong.com/article/404634-b-vitamin-overdose-symptoms/

[BridgetRA]

2 hours ago, MindnumbMama said:

I can respond just to the GERD aspect of what you're dealing with. I've had acid reflux (confirmed by a barium swallow) since I was a child, I'm almost 40 now. I took tums as needed until my 20's when my symptoms became daily.

M 

Thank you MindnumbMama!

Yes, GERD has been my priority this entire year and I actually had it under control when I was Gluten Free two times this year.   I just didn't stick to Gluten Free diet as really I didn't think I had gluten issue i was just doing an elmination diet of sorts.  

For GERD I have the fast track app and read the book and i also read the Acid Water Diet too.  I noticed that Fast Track didn't help me unless I gave up gluten, Acid Water did help.   When i recently had my vitamin levels tested I was shocked to see I wasn't absorbing B12 even though I do eat plenty so that I shouldn't be deficient.   Which is what made me go back to the gluten being the issue.  

All my symptoms are 100% GERD, but if the gluten free diet can control my GERD issues than I feel lucky to be going in that route.   My doctor that I saw last week, said she wanted to me to see the Gastro before going any further as they don't go beyond two rounds of omeprazole.   And if the Gastrologist does say I need it then I will do it, not against medicine but I am against unnecessary medicines.   Omeprazole starts to have negative affects after a few doses (my dr said this is why they don't give anything beyond the two rounds).   The obvious concern is that I might have done too much damage already due my GERD issue but then hopefully maybe not.  So I am open to doing whatever i can.  

If there is any books, podcast or GERD diets you can recommend would love to hear about them, as I am always trying to gain knowledge to keep this under control.

[BridgetRA]

1 hour ago, knitty kitty said:

Prescription drugs such as Omeprazole, Zantac, and Flonase will suppress your body's production of antibodies.  When you test for Celiac Disease after taking any of these medications, you will get false negatives.  

Omeprazole is known to cause B12 deficiency.  Omeprazole inhibits absorption of B12.

Since you know you have one Celiac gene, and you know gluten causes adverse reactions, can you and your doctors accept that as proof of Celiac Disease?  

The SVT, heart palpitations, can be a symptom of Thiamine deficiency.  Chemotherapy causes thiamine deficiency.  Talk to your doctor about high dose thiamine supplementation. 

Other symptoms of thiamine deficiency include Gerd and acid reflux.  Thiamine deficiency is also connected with hernias and swallowing problems like you describe.  Thiamine deficiency affects the Vagus nerve which controls your throat, swallowing and the sphincter to your stomach.  If that stomach sphincter isn't working properly, it may be thiamine deficiency.

Thiamine and magnesium work together.  You might want to try a liquid form of magnesium like Calm by Natural Vitality.  Most of those magnesium pills are wicked big.

You may want to ban shellfish from your diet for a while.  Not only does shellfish have enzymes that destroy thiamine, but shellfish has lots of iodine.  Iodine can trigger and worsen Dermatitis Herpetiformis, a rash that is definitively a confirmation of Celiac.  If you can get a positive diagnosis of DH, you've got your Celiac diagnosis.  

Hope this helps!

wow this is all so helpful thank you, knitty kitty!!!  I had no clue about those medicines suppressing the antibodies, my dr. didn't even tell me about the 6 to 8 weeks of gluten eating.   Didn't realize that omeprazole can have that affect, last time I had a b12 test was two years ago it was in the normal range but like just passing to normal.   

Thiamine is so interesting!!  I haven't been tested yet, but I had it one my list for blood work requests when I go to see my gastro.  Didn't know that about Iodine either, I have contact dermatitis (30 contact allergens) but it really well controlled I don't have flare ups.   But this year I had really bad flare up and it made no sense as well as having issues on my scalp.  I have a follow up with my dermatologist on Tuesday so i will ask her.   She is actually an amazing doctor not like my difficult internal medicine doctor. 

I have gummies of Natural Vitality Calm, I had initially bought it for my daughter but she didn't like them.   So good reminder to get them in my normal routine.   Will definitely try the dropper option as I found the dropper vitamin D was super effective for Vitamin D deficiency. 

Appreciate all of this, feel like I have so many things to think about!

[BridgetRA]

1 hour ago, GFinDC said:

Hi Bridget,

Since you have a high level of vitamin D I think you should correct that issue.  Vitamin D is stored in fat so it doesn't wash out of the body like B vitamins do.  Oily fish has vitamin D in it, so you may be getting all you need from the fish in your diet for now.  I suggest you stop all vitamin D supplements now until your levels are back in a normal range.  Myself I have the opposite problem and tend to being low on vitamin D.

Celiac disease impairs the absorption of nutrients and that can cause various symptoms and problems.  Nerve problems are possible if B vitamins are too low.  I have trouble swallowing probably due to B vitamin or D deficiency in the past.

https://www.verywellmind.com/symptoms-of-too-much-vitamin-d-5105134

https://www.livestrong.com/article/404634-b-vitamin-overdose-symptoms/

Thank you GFinDC!!

Yes totally!!  I was actually deficient in Vitamin D previously and really I have always been.   This is the first time in my life it has been too high and it is really I just finally found a vitamin D that body absorbs so now my doctor want me to cut in half.  But I agree I was concerned when I heard it was so high too will cut it out, I have a retest of vitamin D in a month.  Luckily I don't have any of the symptoms of too much vitamin D yet.  To be honest I have not been taking that dropper form for that long so hopefully we caught it early.   But my Vitamin B12 is definitely deficient even though my diet gets plenty of it. 

[CMCM]

4 hours ago, MindnumbMama said:

 

I can respond just to the GERD aspect of what you're dealing with. I've had acid reflux (confirmed by a barium swallow) since I was a child, I'm almost 40 now. I took tums as needed until my 20's when my symptoms became daily. Then I was put on Nexium (omeprazole) for a few years (this was before they realized daily PPI's will actually increase your acid production), and I did really well on that. When I stopped taking Nexium daily and switched to Zantac I did well on that too. Between my mid 20's and mid 30's I was able to go on and off a daily med based on my symptoms. Some years I only took daily meds 2-3 months out of the year, other years I took them 7-9 months out of the year. 

I've had 3 endoscopy's in my life. My last one, in my early 30's, showed I had developed a mild-moderate hiatal hernia. I began daily Zantac at that point again and switched to Pepcid when Zantac was recalled. My symptoms stayed fairly stable for a couple years. Then over the last 5 years, my hernia symptoms have gotten much, much worse. On top of daily Pepcid I'm now taking hyoscyamine too often for severe and painful hiatal hernia attacks. I'm at the point where need to have my hernia repaired ASAP. I'm just looking for a new GI to do it.

But the reason I explained ALL this is just to give you an idea of what living with GERD can look like. If I were you I would suggest focusing more on that aspect of your issue and treat it. Because all the symptoms you described are classic GERD symptoms, and one or two rounds of omeprazole won't necessarily get rid of that for you. 

Even if your doctor did diagnose you with celiac what would that do for your symptoms? Since you're unable to eat gluten in order to see your true baseline and confirm a celiac diagnosis with biopsy, why not just eat 100% gluten free and see if that fixes your GERD? Chances are you have 2 things going on; some level of gluten intolerance (probably celiac based on family history) and GERD. Diet can help GERD inflammation and symptoms greatly based on the person. But in many, many cases daily meds are unavoidable. For many, if not most, GERD can be a lifetime affliction that will ebb and flow like most other things in like.

Sorry you're having such a hard time, I hope this helps a little!

Good luck!!

M 

I agree with the above info!  I had the worst imaginable GERD in early January (unbelievable pain like being stabbed with a knife or something), and I was at the point where I felt like I couldn't put anything at all into my stomach.  I have omeprazole that I've used for emergencies and not on a regular basis, but it wasn't helping.  Long story short, on January 12 I cut out all gluten, all dairy, all grains, all sugar, and I also was not eating any of the lectin or nightshade vegetables.  Basically, a very very simple and limited diet.  Things got gradually better, then suddenly I realized it was amazingly better, and I haven't had an episode of GERD since I started eating this way. 

I really have come to believe that food can cause all these problems, therefore eating the right foods and eliminating the problem foods can be the solution.

Edited April 4, 2021 by CMCM

[MindnumbMama]

4 hours ago, knitty kitty said:

Prescription drugs such as Omeprazole, Zantac, and Flonase will suppress your body's production of antibodies.  When you test for Celiac Disease after taking any of these medications, you will get false negatives.  

Omeprazole is known to cause B12 deficiency.  Omeprazole inhibits absorption of B12.

Since you know you have one Celiac gene, and you know gluten causes adverse reactions, can you and your doctors accept that as proof of Celiac Disease?  

The SVT, heart palpitations, can be a symptom of Thiamine deficiency.  Chemotherapy causes thiamine deficiency.  Talk to your doctor about high dose thiamine supplementation. 

Other symptoms of thiamine deficiency include Gerd and acid reflux.  Thiamine deficiency is also connected with hernias and swallowing problems like you describe.  Thiamine deficiency affects the Vagus nerve which controls your throat, swallowing and the sphincter to your stomach.  If that stomach sphincter isn't working properly, it may be thiamine deficiency.

Thiamine and magnesium work together.  You might want to try a liquid form of magnesium like Calm by Natural Vitality.  Most of those magnesium pills are wicked big.

You may want to ban shellfish from your diet for a while.  Not only does shellfish have enzymes that destroy thiamine, but shellfish has lots of iodine.  Iodine can trigger and worsen Dermatitis Herpetiformis, a rash that is definitively a confirmation of Celiac.  If you can get a positive diagnosis of DH, you've got your Celiac diagnosis.  

Hope this helps!

This is super helpful!! Gives me so much to look into! Thanks!!

[BridgetRA]

1 hour ago, CMCM said:

I agree with the above info!  I had the worst imaginable GERD in early January (unbelievable pain like being stabbed with a knife or something), and I was at the point where I felt like I couldn't put anything at all into my stomach.  I have omeprazole that I've used for emergencies and not on a regular basis, but it wasn't helping.  Long story short, on January 12 I cut out all gluten, all dairy, all grains, all sugar, and I also was not eating any of the lectin or nightshade vegetables.  Basically, a very very simple and limited diet.  Things got gradually better, then suddenly I realized it was amazingly better, and I haven't had an episode of GERD since I started eating this way. 

I really have come to believe that food can cause all these problems, therefore eating the right foods and eliminating the problem foods can be the solution.

So reassuring to hear this!!  Thank you for letting me know, hoping I can do the same!