Almost positive it is Celiac

[Erika B]

Hello everyone,

 

So here it goes, 

 

For the past several years, I have been extremely ill. I have been severely nauseous and vomiting every day. I also have diarrhea several times per day - namely after I eat (not always but typically) it usually happens RIGHT after I eat I will like, have to run to the bathroom and go. I have been taking Ondansetron for the nausea and vomiting, which, unfortunately, gives me extreme headaches that last all day every day, so I also take migraine medication which doesn't do a dang thing, but also happens to work for my severe head to toe tremors which I also have - I shake through my head to my feet which has also been going on for years. This actually started before the nausea, in my teens. I would have twitches in my face as a pre-cursor to the full-body tremors and then it got worse to the point my whole body shook so bad I couldn't even stand up without getting knocked down. I have an appointment with a gastro on the 29th so I am going to ask him to test me for Celiac which I honestly JUST heard about a few days ago. Up until this point I have been at a loss. No freaking clue WTH has been going on. But now I am almost positive this is what it is. Has anyone else experienced the shaking as well? 

[trents]

Welcome to the forum, Erika B!

The symptoms you describe could point to either celiac disease or NCGS (Non Celiac Gluten Sensitivity). They share many of the same symptoms but NCGS is 10x more common. There are definite and specific tests that are used to diagnose celiac disease. The first stage of testing involves a blood draw which looks for certain antibodies that are associated with celiac disease. The most common and popular antibody test physicians will run is the tTG-IGA. Many docs will run only that test and in so doing will miss some people who actually do have celiac disease because their immune systems are responding atypically to the disease or because their total serum IGA is low. So, ask your GI doc if, at a minimum, who would order total serum IGA and tTG-IGA. Even better would be if he/she would run some additional secondary tests like DGP IgA and IgG for a more complete celiac panel. There is no good test to detect NCGS so celiac disease must first be ruled out. We don't know as much about the immune system pathway for NCGS as we do about that for celiac disease. Here's a primer for celiac disease antibody testing: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

Both celiac disease and NCGS can result in neurological damage which could account for your tremors and shaking. The distinguishing factor between celiac disease and NCGS is that celiac disease damages the villi that line the small bowel. The autoimmune inflammation from celiac wears the villi down and greatly reduces their surface area/efficiency to absorb nutrients. This is where all of the nutrition in our food is absorbed so damage to this area typically results in numerous vitamin and mineral deficiencies, which of course, creates numbers of other health issues. Thus, the second stage of celiac testing is an endoscopy with a biopsy of the small bowel lining to check for damage to the villi.

Whatever you do, don't cut back on gluten until all testing is done or you will invalidate the testing.

[Scott Adams]

Neurological issues like you've had can definitely be one way that celiac disease can present in many people. I had severe neck issues due to muscle knots and spasms, along with tingling on the right side of my head. I also had numbness and tingling in my toes, as well as feelings of always being off balance and about to fall. If it is celiac disease or NCGS, the good news is that you can recover from many of these symptoms.

[Jennyjenny]

Before I was diagnosed, I had all those symptoms. Right after eating gluten (in hindsight), it got so bad that my head would shake violently up and down even while lying down. I have read it has something to do with the vagus nerve which is attached to the stomach and other body parts.

[Erika B]

I finally got into a stomach doc. I'm getting my blood tested for celiac tomorrow, have an ultrasound next week and a biopsy scheduled for the end of the month. So we will see. I have also developed a very dry/itchy rash on the skin of my tush. No matter how much lotion and vaseline I put on it, it still just stays the same. Reading into it I see that may be an apparent symptom as well

[trents]

Keep us posted.

[Erika B]

Well, I got my blood test results today. And I'm very confused and also kind of scared. The only thing flagged in the Celiac panel was this: Immunoglobulin A, Qn, Serum, which I have a 78/low out of 352. Everything else showed negative. Also my T4,Free(Direct) was 1.01 out of 1.77 if that means anything to anyone. But then when you get down to the CDC panel everything gets very scary. My red blood cell count is very low, as is my white blood cell count and my hemoglobin, Hematocrit, MCHC, and Neutrophils , and those are just the ones that showed numbers and not a Not Estab. , %. 

[trents]

Erika, the low IGA, Qn, Serum is not a test for celiac antibodies. It is the total serum IGA count. Low total serum IGA will drive the celiac antibody scores down and can create false negatives.

"Total serum IgA: This test is used to check for IgA deficiency, a condition associated with celiac disease that can cause a false negative tTG-IgA or EMA result. If you are IgA deficient, your doctor can order a DGP or tTG-IgG test." From https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

Can you post all the celiac antibody tests that were run, with their scores and their reference ranges?

Edited July 12, 2023 by trents

[Erika B]

Deamidated Gliadin Abs, IgA: 8/19

Deamidated Gliadin Abs, IgG: 6/19

t-Transglutaminase (tTG) IgA: <2 of 0-3 , U/mL

Endomysial Antibody IgA: negative

TSH: 1.840/4.5

 

Those seem to be all of the Celiac related ones

[knitty kitty]

@Erika B,

Low red (and white) blood cell counts are indicative of anemia.  Anemia can cause false negatives on antibody tests, as can diabetes.  Have you been checked for diabetes? 

I have Type Two Diabetes.  If my blood glucose level gets too high (or too low), I can get body tremors.  

The continual nausea, vomiting, headaches and diarrhea might be symptoms of Thiamine Deficiency.  I had symptoms like these and despite a variety of medications, I did not improve until I supplemented with Thiamine.  Doctors don't recognize nutritional deficiencies like Thiamine deficiency and Gastrointestinal Beriberi.

Learn more here...

Gastrointestinal beriberi: a forme fruste of Wernicke’s encephalopathy?

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6040496/

 

[trents]

I would not write off celiac disease just yet because of the low total serum IGA and because so much of the other bloodwork indicates enteropathy of some kind. You have a biopsy coming up soon, correct?

[Erika B]

  On 7/12/2023 at 3:39 PM, trents said:

I would not write off celiac disease just yet because of the low total serum IGA and because so much of the other bloodwork indicates enteropathy of some kind. You have a biopsy coming up soon, correct?

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Yes, I have a biopsy coming up at the end of the month

[trents]

  On 7/12/2023 at 4:10 PM, Erika B said:

Yes, I have a biopsy coming up at the end of the month

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Let's check this. You were eating normal amounts of gluten (two slices of wheat bread or the equivalent) for at least 6-8 weeks before the blood draw to test for celiac antibodies?

[Erika B]

  On 7/12/2023 at 4:46 PM, trents said:

Let's check this. You were eating normal amounts of gluten (two slices of wheat bread or the equivalent) for at least 6-8 weeks before the blood draw to test for celiac antibodies?

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Yes, probably even more than that. Well actually, there was a time about a month ago, maybe 3 weeks, whenever I first posted here when I first heard about Celiac disease and I tried to stop eating gluten altogether. I'm not sure how long I lasted on that, though, probably not very because then I read about how you're supposed to continue eating it for test results to read correctly.

[Erika B]

Well, I got laid off from my job of 3+ years today, and my insurance is only good for another couple of weeks, so I'm going to have to cancel the biopsy. And that's just the beginning of my troubles... I messaged the office and ask if there was another blood test or anything they could do before then, but I'm not sure if that's going to help.

[trents]

  On 7/15/2023 at 4:21 AM, Erika B said:

Well, I got laid off from my job of 3+ years today, and my insurance is only good for another couple of weeks, so I'm going to have to cancel the biopsy. And that's just the beginning of my troubles... I messaged the office and ask if there was another blood test or anything they could do before then, but I'm not sure if that's going to help.

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Sorry to hear of your job loss. Bumber! Bad timing too, with regard to your pursuance of testing for celiac disease. You are in my prayers.

[knitty kitty]

@Erika B,

You could ask your doctor for a genetic test to see if you have any genes for Celiac Disease.  You don't have to be eating gluten for a genetic test.  

Having the genes for Celiac Disease means one has the potential to develop active Celiac Disease.  Some doctors will make a diagnosis of active Celiac Disease if one has genes for Celiac and shows health improvement on a gluten free diet.  

Common nutritional deficiencies occur in Celiac Disease like anemia due to deficiencies in iron or in Cobalamine B12.  A B Complex vitamin supplement is a good idea, as well as Vitamin D and magnesium.  

Best wishes!

[Erika B]

Well luckily, I was able to qualify for a special enrollment period with marketplace and get a really good plan, and I'm pretty sure the doctor who is performing the biopsy takes it. This plan also has a $0 deductible so lol I guess it's kind of a blessing in disguise 

[trents]

Good to hear.