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Do I Really Have Celiac & How Sure Can I Be About Testing?

Vanessanh8819

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Vanessanh8819 Newbie
Vanessanh8819
Posted

I was hoping some of you might be able to help me a little with this, since I'm pretty new to the whole concept... the more I learn the more depressed I am, and I'm really not sure what to think anymore.

A little back story... I was born 6 weeks premature and had a lot of lung and digestive problems. For about the first four years of life my mother was told to keep me off wheat and dairy in order to help my lung function (and she did, because it helped a lot.) From a digestive point, I can't remember a time where I didn't have some kind of digestive issue in my childhood (I'm 22 now) I was almost always constipated, and if I wasn't constipated I had diarrhea. About 6 years ago I was diagnosed with hypothyroidism. While a lot of my symptoms decreased a bit, I never seemed to shake most of them... the constant fatigue and lack of energy (sometimes it can take me a half hour to drag myself out of bed), joint and muscle pain, constipation, nausea, bloating, issues with sleep and problems with memory. In May, I started to reach the point where I couldn't take feeling that way anymore and just wanted to find some sort of way to feel better. I kept getting brushed off with it being my thyroid (even though my levels were normal) or my B12 levels (which never seemed to change no matter how much or what supplement I took.) I decided to try cutting out wheat and dairy to see if I felt any better, thinking that maybe I still had an intolerance/whatever my issue was with it. I ended up going gluten free since the only wheat free products I could easily get my hands on. I had a couple points where I ate wheat/gluten but avoided it as much as I could (it was generally only times where I ate out or with family and didn't really have any decent wheat free choices.) Beyond the times when I ate out, I felt a whole lot better. I had energy, I fell asleep easily and actually felt rested. For the only time in my life that I can actually remember I didn't have any real digestive problems beyond my usual nausea that never goes away.

I'm a college student (and not a morning person) so I found myself not having a whole lot of time to continually make breakfast like I did all summer. Since I had never considered that I might have an issue with gluten, I had turned towards instant oatmeal. Ever since then I've had some of the worst diarrhea of my life and have gone from being someone who was very rarely gassy to having it constantly. It didn't dawn on me until about two weeks ago that this might be an issue with gluten. (I have some issues with anxiety, and I've always noticed the correlation between my anxiety and stress level and my digestive functioning... so it didn't really ring any bells right away.)

I've heard that Quaker Oats are basically contaminated with gluten, is that correct? Does it seem like I might really have an issue with gluten? (I worry that I am possibly making the connection in hopes that things will get better and not being objective.) I saw my GP on monday, and asked for her to add the Celiac panel onto my normal labwork I was due for. I told her that I noticed the big change when I started eating the oatmeal and wondering if there was a connection with it (so she knew I was gluten free for a couple months.) Have a shot myself in the foot by going gluten free? (She didn't mention any issue with my dietary change, but some of the things I've read say otherwise.) Is it still possible that enough antibodies might still exist to be measured? Am I going to have to go back to eating wheat and gluten for the results to come back positive? (I'm not really sure I can do that...) Do I have any other options for diagnosis? I've seen the information about the biopsy's and such, but it seems like that would require me to go through the same dietary change. I notice some people mentioning genes.. but is that really reliable, and who would I really have to go see to get that done? (.. and does anyone know how easily insurance covers it?)

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ShayFL Enthusiast
ShayFL
Posted

Sadly if you have been predominately gluten-free for awhile, that Celiac blood panel can come up false negative. You MUST be actively eating gluten foods/and lots of them for a good 3 months to have hopes of an accurate test. If you can handle it, you can ask that the test be deferred for 3 months. Start eating cream of wheat for breakfast, a sandwich for lunch and pasta for dinner. This amount everyday until test time.

If you already "know" deep down that gluten may be an issue, you can opt for a 100% gluten-free diet (including toiletries, etc.) and see if you get/stay better.

There is also Enterolab that can dx gluten intolerance (not Celiac) up to 1 year gluten-free. They also offer genetic testing. And casein (dairy), soy and egg sensitivity tests.

swalker Newbie
swalker
Posted

I can't comment on testing because we just removed gluten and where successful, so we haven't tested.

The Quaker Oats are contaminated as are all oats unless they specify that they are gluten free. About 20% of wheat intolerant people can't digest oats either but you are so new to the diet you may just need to heal first and then try the gluten free oats.

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    • knitty kitty
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      By knitty kitty · Posted

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    • captaincrab55
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      By captaincrab55 · Posted

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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
      High DGP-A with normal IGA

      By knitty kitty · Posted

      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.
    • rei.b
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      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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