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Didn't Get The Results I Expected

abbycat1

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abbycat1 Newbie
abbycat1
Posted

I have been having major problems with chronic and violent diarrhea for months now. Saw a Gastroenterologist two weeks ago who did a colonoscopy (normal) and blood work. I don't see the doc again until next week, but I asked for and got a copy of the blood work today. I was positive I had a problem with gluten after reading the posts on this board, but it appears the only blood work pertaining to celiac that I had was CRP which is under 2.9 and tTgAB IGA which is less than 10; both of those are normal. So now I have no idea what is wrong with me. Is there something more I should ask the doctor to test me for? I really need this issue to STOP, I am so tired of dealing with it! The diarrhea isn't constant but when it happens it's really urgent and lasts for days. What do I do now?

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Marilyn R Community Regular
Marilyn R
Posted

Oh, Abby, I feel for you. I remember those days. The tests are unreliable, you can try gluten-free and see if you feel better. Then you'll be "gluten intolerant" instead of having celiac disease, but if your BM's (and life) gets more normal, who could possibly care about test results? Try it and see. You have nothing to lose, except possibly the doctor that didn't recognize what you're going through.

love2travel Mentor
love2travel
Posted

Just so you know there is a fairly high false negative rate in bloodwork results - up to 30% from what I have heard and read. And the colonoscopy does not test for celiac but an endoscopy does (or gastroscopy as we call it in Canada). But in order for that to happen you must be eating the equivalent to 3-4 pieces of bread per day for three months and get at least 8-11 samples taken (biopsies). Has anyone mentioned that to you?

Of course if you do not wish to go that route (and who can blame you?) just do as Marilyn says - if eliminating gluten makes you feel better it seems to be the culprit. I had more diarrhea after going gluten free than before and found that I was intolerant to lactose. After going off lactose for a few months I recently tried some cheese and was fine, though I still cannot do milk or ice cream.

This can be extremely frustrating. I really hope you are able to find what is causing your problems so you can live without worry and always wondering what is going on!

mushroom Proficient
mushroom
Posted

Those gastroenterologists should change their names to intestinalgastrologists :blink: - always wanting to look at the bowel, the end product, instead of what produces it :lol: While he was in there why did he not so an upper endoscopy and check for celiac? As it is, he did only one celiac blood test, the tTG, which he was taught to do in med school eons ago :rolleyes: Didn't even do a total serum IgA to see if you are a normal IgA producer, let alone a DGP which is the newest and most specific blood test for celiac. Really, one would like to line them all up against a wall and shoot the lot of them when it comes to diagnosing celiac. The CRP is C-Reactive Protein which is a measure of inflammation in the body, done on the theory that celiac disease produces inflammation and if you don't have any, you don't have it. Don't know whether or not this is true because I had oodles of it which did not go away gluten free (or even diminish) because it was caused by my rheumatoid arthritis. I was never tested for celiac because no one ever thought of it and I knew nothing of it at that time :unsure:

So you are left with two options - seek further testing (hopefully from someone else) or try the gluten free diet and see if you feel better (I sure did, even though I went gluten free for my RA rather than for my gut -- which just miractulously got better).

Sadly, even further testing may not produce the results you are looking for because, as the others have said, there are so many false negatives, and gluten intolerance appears to be on a spectrum with celiac disease being just one part of that spectrum. Some celiacs have no GI issues at all. So you have to decide if you can stay gluten free without a diagnosis - but if it makes you feel better, why wouldn't you?

abbycat1 Newbie
abbycat1
Posted
  • Author

No matter what the doc says, I am going to try gluten free after all this blood work stuff is done. Thank you for confirming that I am NOT crazy, and I know what my body is telling me. This forum is just wonderful, thanks everyone!

nora-n Rookie
nora-n
Posted

Nowadays the most common form of celiac is the patchy type, but the ttg test is only for picking up total villous atrophy, and even then it only picks up 80% or less.

The right test nowadays is the DGP test which is able to pick up patchy celiac.

Lots of people report they got both the IgA and IgG versions done on the tests, and several people get all the tests done, and sometimes only one of the shows up positive.

So only running one test is like hit and miss.

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      High DGP-A with normal IGA

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    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
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      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
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      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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