Struggling to get a diagnosis

[MsssSqueaks]

Hello and thanks in advance for any help! I'm very sad today.

So my Celiac blood tests were inconclusive. I recently had an endoscopy/colonoscopy to get an official diagnosis, and the doctor visually saw atrophy to my stomach and duodenum. Biopsies came back with mild stomach inflamation BUT normal duodenum and negative for Celiac! My doctor even had them check it again because he is convinced I have Celiac.

I am negative for every blood test except Glia D Peptide IgA. Antbodies were 72 in March but are now 186.2. Is that a large increase? Is there any other condition that can cause these antibodies???  

Glia D Peptide IgA     186.2 U/mL
<15.0 Antibody not detected
> or = 15.0 Antibody detected

Glia D Peptide IgG     <1.0 U/mL
<15.0 Antibody not detected
> or = 15.0 Antibody detected

TTG IgG     <2 U/mL     Range 0 - 5 U/mL
Negative 0 - 5
Weak Positive 6 - 9
Positive >9

TISSUE TRANSGLUTAMINASE AB, IGA     <1.0 U/mLU/mL
<15.0 Antibody not detected
> or = 15.0 Antibody detected

IGA,TOTAL
IgA     118 mg/dL     Range 85 - 499 mg/dL

My worst symptoms are fatigue, brain fog, and depression. I have some GI symptoms but they're pretty minor. I do also have Autoimmune Pernicious Anemia diagnosed last year, and many symptoms cross over with Celiac. I'm wondering if I have something else other than Celiac that my doctor isn't considering. I also really just want answers. I probably need to go gluten free anyway for general autoimmune reasons, but I feel like there's a big difference between a 100% strict diet to prevent damage to my body from Celiac and a more "optional" choice to do something that's probably better for my overall health.

I have not had genetic testing. I also just learned there's an EMA test that I have not had. Thoughts? What should I do next? I thought the biopsy would be the end of this struggle...

[trents]

Were you eating normal amounts of glute leading up to the celiac testing?

[Scott Adams]

Yes, hopefully you were, but if not it could create false negative results. 

Also, ~10x more people have non-celiac gluten sensitivity rather than celiac disease, and currently there is no test for this. If you were eating gluten daily before all of your testing was done, then your next step would be trying a gluten-free diet to see if your symptoms go away.

If you were not eating gluten daily for 6-8 weeks before your tests, you may need to get them re-done.

[MsssSqueaks]

7 hours ago, Scott Adams said:

Yes, hopefully you were, but if not it could create false negative results. 

Also, ~10x more people have non-celiac gluten sensitivity rather than celiac disease, and currently there is no test for this. If you were eating gluten daily before all of your testing was done, then your next step would be trying a gluten-free diet to see if your symptoms go away.

If you were not eating gluten daily for 6-8 weeks before your tests, you may need to get them re-done.

Thank you, yes, I was eating gluten before all tests and have yet to change my diet. I ate quite a lot of gluten because I tried to eat everything I love that I might soon have to cut out.

Is there any special significance to the Deamidated Gliadin Peptide IgA test? I tried googling to see if those antibodies are associated with anything other than Celiac, but nothing came up. Does it seem very odd that everything but that one test is negative? And that those antibodies more than doubled in eight months?

If I try going gluten free and my symptoms improve, will I ever know if I have celiac vs. non-celiac gluten sensitivity? Would I need to be just as careful about cross contamination if I don't have celiac?

(Also I wasn't sure if I should quote your post or just reply, sorry!)

[trents]

From your first post: 

I recently had an endoscopy/colonoscopy to get an official diagnosis, and the doctor visually saw atrophy to my stomach and duodenum. Biopsies came back with mild stomach inflamation BUT normal duodenum and negative for Celiac!

That seems contradictory. The gold standard for being diagnosed with celiac disease is villous atrophy in the duodenum. You say it was visually apparent to the doctor doing the scope but the lab report from the biopsy came back negative for celiac disease? 

Sometimes the damage to the villi is patchy. I wonder if the doctor sampled an area for the biopsy that was not atrophied. I also wonder if there could have been a mistake at the lab. Some doctors who are inexperienced will not sample enough areas to get a good representation. I'm thinking you should get retested, both for antibodies and villous atrophy via scope and biopsy. Something doesn't add up here.

[MsssSqueaks]

9 minutes ago, trents said:

That seems contradictory. The gold standard for being diagnosed with celiac disease is villous atrophy in the duodenum. You say it was visually apparent to the doctor doing the scope but the lab report from the biopsy came back negative for celiac disease? 

I agree it's super weird and I am beyond frustrated. I've had the blood tests run twice already (just not EMA yet, asking for that and genetic).

My first GI doctor was terrible so I specifically sought out my current doctor who is supposed to be a celiac expert. During the endoscopy he saw "gastric mucosal atrophy and duodenal mucosal atrophy". He already had the pathologists re-review because he was so surprised by the negative biopsy. My stomach biopsies came back with "mild imflamation" which lines up with my Pernicious Anemia. PA causes atrophy to the stomach; I wonder if it can also damage the small intestine. PA is another twisty, complicated, hard to diagnose disease.

I have a follow-up appointment in a couple of weeks so I'm working on a list of questions. If I need another endoscopy, it will be my third in less than a year

[trents]

Are you on NSAIDs by any chance? May we ask what medications you are on?

[MsssSqueaks]

Not on NSAIDS and try to avoid all painkillers right now. I did have an 8-month period where I took them a few times a week, probably more than I should have.

I use QVAR for asthma, but no other medications. I don't have heartburn or take anything for GI issues, at most I will have Pepto if my stomach is upset.

Since I have PA I require B12 injections, and I do take some supplements (B-complex, iron, vitamin C, zinc, vitamin D+K2, magnesium). I needed an iron infusion, and my vitamin D has been critically low. PA explains why I can't absorb B12, but I need to find out why I can't absorb other nutrients, hence the celiac testing.

[trents]

Have you had a CVC and CMP recently? Do they show anything out of whack besides the hemoglobin, hematocrit, ferritin levels? How are your total protein and albumin levels?

Edited October 31, 2021 by trents

[trents]

Have you been checked for H. Pylori? https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5924744/

[knitty kitty]

@MsssSqueaks,

Pepto-Bismol contains aspirin, aka salicylates, which causes inflammation and damages gastric mucosal cells.  You should reconsider its use.  Is your doctor aware you are using it?

 

[Scott Adams]

I have not heard the aspirin causes gut inflammation, and I’ve seen studies that show the opposite, and that it actually lowers your risk of colon cancer.

[knitty kitty]

I'm surprised you didn't know, Scott.  

"Aspirin-induced gastritis and gastrointestinal bleeding"

https://pubmed.ncbi.nlm.nih.gov/6499/

"Acute hemorrhagic gastritis occurs in from 50% to 70% of all patients taking aspirin, is not directly related to dose size, and can be severe enough to cause death in a few cases. No tolerance appears to ever develop."

And...

"Answers about aspirin"

https://www.health.harvard.edu/heart-health/answers-about-aspirin

"In addition to lowering the blood's ability to clot, aspirin also inhibits helpful substances that protect the stomach's delicate lining, creating a "double whammy" effect. As a result, stomach upset or bleeding in the stomach and intestines can occur."

[MsssSqueaks]

I'm having more bloodwork done soon, but last CBC/CMP in May was fine. I hope my ferritin hasn't dropped but was finally corrected with an iron infusion in April. 

Endoscopy #1 showed "no h. pylori-like organisms" but I am pushing for more investigations of that and SIBO just in case. Based on symptoms I don't think either of these are that likely.

I will check out the aspirin info, thanks. Any Pepto use is only once or twice a month so it seems an unlikely culprit.

My stomach atropy is explained by Pernicious Anemia. I haven't been around the forum long enough to know how often this comes up, but it's a safe bet there are people here suffering with undiagnosed B12 deficiency. Doctors know almost NOTHING about how serious/fatal B12 deficiency can be. Here's some good info in case it helps anyone:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6543499/?fbclid=IwAR1t5UVXiUhxeIo1-XEK3NOamlaocgTYC9_B47YC7ROb_IWVj9X7GukuyaE

https://onlinelibrary.wiley.com/doi/full/10.1111/bjh.12959 

What does it mean that my DGP IgA levels are high? Would anyone be comfortable with a celiac diagnosis on that alone?

I think I'll benefit from a gluten-free diet regardless, but I really need to know how careful I have to be about cross contamination. Will a future scrap of gluten cause damage, temporary discomfort, or nothing???

 

[trents]

I'm wondering if you have some form of atypical celiac disease or if you have NCGS. If you do not make an all out commitment to gluten free eating for a significant period of time, including guarding against cross contamination (CC), you cannot be sure you have ferreted out whether or not gluten is the problem or even part of it. We cannot possibly say how sensitive you are to CC so you must assume you are sensitive. 

We cannot tell you what you want to know about your high DGP IGA levels. The results of your celiac panel are indeed unusual. However, keep in mind that the DGP IGA is run for a purpose. It is not the most specific antibody test that can be run for celiac disease but it's sensitivity is it's strong point.  

Damage to your digestive system from PA may be the whole or it may be part of the problem, with celiac disease or NCGS being another possible part. I think it would be wise to give heed to your PC physician and make a serious attempt to eat gluten free for at least a year to see if your tummy distress improves. It will not impact your iron deficiencies because you already know you have PA. It can take two or more years for complete healing to occur but you should see improvement before then if gluten is an issue.

[MsssSqueaks]

I really appreciate your help. So it seems this is an all-or-nothing diet situation for me then.

Do you know if there's any connection with the ANA test and celiec? I had a "weak positive" result of 1:80 speckled that doctors so far don't see as significant. It could be another clue...

[trents]

Yes, definitely all or nothing. But don't beat yourself up if you get accidentally glutened occasionally despite your best efforts. It happens to all of us occasionally. The biggest danger is eating out at restaurants where you have no control over food preparation with regard to cross contamination. Also, gatherings with family and friends is a challenge. The social implications of eating gluten free are the biggest challenge to many people trying to practice a gluten free diet. It causes some to just throw in the towel or even to disregard their diagnosis.

You are blessed in have a PC physician who takes celiac disease seriously. Usually, we see the opposite in the stories of our forum participants. I would take his/her opinion seriously.

Antinuclear Antibody (ANA) tests are run to detect autoimmune diseases. But they are very nonspecific and positive results could be anything from celiac disease to lupus to anything in the autoimmune alphabet of diseases in between. A positive there could be related to your PA and gastritis. But it could be related to celiac disease. 

[knitty kitty]

@MsssSqueaks,

I know of one moderator who used to post that only tested positive on the DPG test.  The DPG is frequently positive in children and is acceptable as a confirmation of celiac disease.  I may be mistaken, but she had anemia, too.

I'm familiar with B12 deficiency occurring after anesthesia.  The nitrogen in the anesthesia (nitrous oxide, aka laughing gas, and nitrogen compounds in injected local anesthetics) binds irreversibly with the cobalt in B12 (Cobalamine).  Over a period of weeks to months, one's B 12 stores in the liver become depleted because the anesthesia can take up to eighteen months to clear.  If someone has low stores of B12, deficiency symptoms can occur quickly.  However this connection can be overlooked since the precipitating event happened weeks or months earlier.

 I've suffered severe clinical depression after dental and medical procedures where anesthesia was used.  

B12 needs thiamine, riboflavin, pyridoxine, and niacin in addition to folate to function properly.  High doses of all the B vitamins together produce beneficial effects.  

 

[Russ H]

23 hours ago, Scott Adams said:

I have not heard the aspirin causes gut inflammation, and I’ve seen studies that show the opposite, and that it actually lowers your risk of colon cancer.

Not the gut - aspirin affects the stomach through several mechanisms. It doesn't directly cause inflammation. It is a COX inhibitor and reduces mucus secretion and neutralising bicarbonate production from the stomach walls, allowing stomach acid to cause mucosal damage. I would steer clear of it unless prescribed by a doctor. Now I am of a certain age, I keep an aspirin by my bed and in my wallet in case I ever get the crushing chest pain.

[MsssSqueaks]

23 hours ago, knitty kitty said:

High doses of all the B vitamins together produce beneficial effects.  

 

Be cautious with B6 as it is the only B vitamin that can cause toxicity, easily for some people, and even at moderate doses.

[Chrismark]

Just now, Chrismark said:

 

I was tested twice for Celiac Disease, and these tests were inconclusive. Doctor's were unable to say that I had Celiac Disease. I spoke to several Doctors in the United States and they all gave me the same inconclusive answer.  I was suffering from Brain Fog, and I also lost memories. I was also suffering from Fatigue, and other symptoms that told me that I might have Celiac Disease. I understand what you are going through