My world of confusion

[Galixie]

I apologize in advance for the length of this. I'm complicated and very confused.

8 years ago I was tested for celiac because of some vitamin deficiencies. The only test that came back positive was a gliadin iga. An upper endoscopy also didn't find celiac. I didn't have any typical celiac symptoms but going off of gluten seemed to improve the dizzy spells I'd had for years.

About a year ago I discovered that I have low blood volume. This might (probably) explain the dizzy spells. There was a possibility that gluten really had no effect and that the timing of the spells was coincidental. The only way to find out was to go back on gluten and see if my dizzy spells returned.

In mid-July, after being gluten free for a few years, I decided to test that possibility and went back to eating gluten. There was no noticeable difference/increase in dizzy spells. I thought this might be a good sign.

Then something new and different happened. About a month after I began eating gluten again, I began having ulcer-like symptoms. I had never had gastro symptoms previously, so it seems like a leap to assume it is related to eating gluten. It's not an ulcer though.

I had a second upper endoscopy done in late September. They found inflammation but nothing else (no celiac, and no h. pylori). But my blood work is showing signs of malnutrition despite eating normal amounts.

I'm confused for a couple of reasons: Every doctor swears up and down that it isn't autoimmune and I thought NCGS didn't cause absorption problems. I also don't understand how mere inflammation can impact nutrient absorption. I thought there had to be some form of atrophy to cause that problem.

Does anyone have any idea what this is? I don't really want to commit to going gluten free again if that's not the real problem.

[ravenwoodglass]

Welcome to the board. All you need is one positive blood test on the panel to have celiac. You had that positive. How many biopsies did the doctor take? At least 5 or 6 should have been taken from different areas of the small intestine. Damage can be patchy and easily missed. Doctors sometimes miss that the inflammation and other signs are also indicitive of celiac and won't diagnose unless the villi are fully gone. You are celiac and you need to get back on the diet strictly. Do be sure to read the Newbie 101 thread at the top of the Coping section. It has a lot of valuable info to help you stay safe. I hope you are able to heal quickly. Ask any other questions needed as there are a lot of very knowledgeable people here to helpin any way they can.

[tessa25]

You could get the full celiac blood test done then go 100% strict gluten free for 3 months and repeat the full blood test panel. If you have celiac your high numbers should go down a bit over that three months.

The full celiac panel includes:

TTG IGA
TTG IGG
DGP IGA
DGP IGG
EMA
IGA

You have to be eating gluten daily for 12 weeks before the first blood test to see the high numbers.

[cyclinglady]

What if the damage was beyond the reach of the scope?  

When you had the repeat endoscopy in September, did they repeat the blood tests?  If not, have them repeated provided you remain on gluten for 8 to 12 weeks.  I was positive only on the DGP IgA when I was diagnosed and ever since then too in repeat blood work.  

My niece went to four GIs.  The fourth ordered a pill camera and found that she had severe Crohn’s damage far beyond the reach of both scopes.  Not saying you have Crohn’s but something is obviously wrong.  

What part of the stomach were the biopsies taken to test for H. Pylori?  The top part is where they often catch Autoimmune Gastritis.  I happen to have had a a polyp located there and my diagnosis was caught.  You can also have antibodies testing for that.  

Get all the medical records.  There seem to be too many unknowns!  

 

[Galixie]

Thank you for the replies.

The second endoscopy was really mainly looking for an ulcer. I only briefly brought up the topic of celiac when speaking with the consultant. None of us were really thinking of it as a possibility at the time. I had gone from feeling fine to a fairly sudden onset of symptoms that all seemed to point toward ulcer. The symptoms just wouldn't go away (and still haven't).

I believe they took three biopsies inside the stomach and duodenum principally looking for h. pylori bacteria. They didn't find any. All they found was inflammation (gastritis).

My gp, after reading the findings, explained that they can definitively say it isn't autoimmune because no signs of high white blood cells counts were detected. (I assume they look for antibodies in the biopsies as standard protocol and that none were detected. But I don't really know and the report doesn't say.)

No retesting of serum antibodies was done, and I doubt I would be able to convince my gp to rerun those tests after nothing was found in the endoscopy.

My real point of confusion is the inflammation/atrophy question.

If all of the doctors are correct about it not being autoimmune, then there has to be something else going on, I  think. None of what I've read about NCGS indicates that it can cause malnutrition. Gastritis alone can't cause malnutrition either. The only way gastritis can lead to malnutrition is through gastric atrophy, which they didn't find.

I'm struggling to reconcile how it's possible for me to only have gastritis (and nothing else) when my low BUN level is pointing to malnutrition. When I brought up the abnormal BUN result with the gastro, he didn't really have an answer. It's something they only pay attention to when it comes back high. When I pointed out that I had continued to eat normally despite the symptoms he was especially stumped.

How can it be celiac when it never shows up that way? Every doctor keeps saying it isn't.

If it's NCGS, how can it cause the nutrient deficiencies I'm experiencing?

Are there any medical studies showing that NCGS can cause nutrient deficiencies?

[GFinDC]

It can be celiac because 84% of the people with celiac disease in the USA are not diagnosed.  If celiac disease caused us all to break out in purple and yellow stripes it would be easy to identify.  But it doesn't and instead presents with a a multitude of varying symptoms for different people.  You had a positive on one antibody test already.  That's all it takes for damage to occur.  The antibodies job is to do damage, and they are good at it.  The endoscopy is used to confirm that villi damage is occurring.  But you could be having antibody damage to the skin, nerves, joints, liver, brain, thyroid, or some other organ instead.

Celiac testing is not perfect.  Maybe someday they will have tests that detect a 100% of celiacs right away.  But that hasn't happened yet. You can wait for your damage to get bad enough for current testing to find it.  Or you can go gluten-free and stop hurting yourself.

Or go find a different doctor to review all the testing that was done.  Get a second opinion.  Maybe check with some local celiacs on who a good doctor is.  But the reality is that some ,people just don't test well.  It sucks, but there it is.

[Beverage]

Hi. I've never heard that high white blood counts are an indication of autoimmune diseases... is that true???

[cyclinglady]

42 minutes ago, Beverage said:

Hi. I've never heard that high white blood counts are an indication of autoimmune diseases... is that true???

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Yes....but these are found in the small intestine.  A high white blood cell count measured in blood tests can 8ndicate infection, etc.  

[Galixie]

On 11/2/2018 at 5:58 PM, Beverage said:

Hi. I've never heard that high white blood counts are an indication of autoimmune diseases... is that true???

I am only repeating what I was told, so I don't really know myself.

Last night I was reading this article that seems to indicate (in rats anyway) that inflammation can affect nutrient absorption. So that's interesting.

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