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Does This Sound Like Celiac? Please Help!

leethinker

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leethinker Rookie
leethinker
Posted

Hi everyone,

I've posted here before. I recently had an endoscopy done. Unfortunately, it was not to test for celiac, but rather just to see if there was anything else going on in there like cancer. Luckily everything was good except for mild gastritis. I've done a blood test IgE which showed that I definitely have a "food allergy". That was 650 when it should be under 100. My doc said my symptoms are from the food allergy and I should just go home and test it out myself through an elimination diet.

These are my symptoms, all of which developed while I was pregnant with my second child:

- Slightly elevated bilirubin levels

- Pain in upper abdomen (almost always), including a very annoying pain under my left rib.

- CHRONIC constipation. (I am not exaggerating!)

- EXTREME tiredness all the time.

- Headaches.

- Very dry excema on my hands, inbetween my fingers.

- Joint pains (my knees are suddenly grinding even though I am thin and do no sports at all; my right shoulder hurts all the time, and started hurting around the time the rest of my symptoms developed.)

- Mouth ulcers/canker sores in my mouth, & cracked corners of my lips (this happens occassionally)

- Mild depression and relatively strong anxiety which I cannot explain logically

- Major trouble concentrating. (I often say I feel like I have ADD)

- Blurry vision even though my eyesight is nearly 20-20

- My skin every so often starts to hurt really bad, like it's burning. It hurts to even touch slightly. It's really strange. It will just start up and then last for a day, and then return to normal. Really wierd.

I'm going to a medical doctor who is also a homeopath on Monday, and I am really hoping she will test me for celiac. I swear I have this! Supposedly my family doc tested for a gliadin allergy but it was negative. However, I had gone gluten-free for two weeks before the blood test and then only a couple days before the test I started eating gluten again. So, maybe I didn't have enough in my system to show up?? On the other hand, my doc said it's probably IBS, so I'm starting to think they don't take me seriously.

I'm so incredibly frustrated.

My son, with whom I was pregnant when my symptoms started, had an "allergy" to grains the first year of his life. Everytime he ate a piece of bread or cracker, pasta, etc., he would break out on his face in a terrible rash. I took him off gluten and it went away. I then kept testing, periodically giving him a piece of bread, and -whatdoyaknow- his rash came back. After around his first birthday, however, his rash never came back and now he can eat gluten without getting a rash.

Anyway, what you do all think??? I'm starting to get really depressed, angry and desperate!!! I want to go off gluten but I really want to know what it is. It's bothering me. I especially want to know so that, in case I do have celiac, I can get my kids tested. They're so little I want them to be healthy. I think my daughter might be sensitive too.

Thanks a lot for your help.

Kerri

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ravenwoodglass Mentor
ravenwoodglass
Posted

I think you should get the full celiac panel run when you see the doctor on Monday. But do remember that there are false negatives. The doctors advice to do an elimination diet was really a good one, it is too bad he didn't refer you to someone or give you some guidance himself. If you don't want another endoscopic exam for biopsies then do just go ahead and give the diet a good strict try. Do you have a copy of the report from your endoscopy that you already had? Sometimes there are changes, like gastritis, certain changes in the mucosal lining, elevations in certain cells that can be seen that are common to celiac but not always diagnostic or recognized as being celiac related. When you are ready to start the diet you have come to the right place for info. There is a lot more to it than just food so feel free to ask any question you need to.

ShayFL Enthusiast
ShayFL
Posted

Kerri...you need a complete Celiac panel run and you need to have been eating gluten in fair amounts daily for a good 3 months before the test. Otherwise there is a strong risk of a false NEG. Then you will need another biopsy to take samples specifically for Celiac. This is the only way to get an official dx for Celiac.

If you dont want to do that, then you can pay out of pocket for Enterolab to test for gluten sensitivity and get the genetic testing to see if you have Celiac genes. This will not dx Celiac, but will tell you if you are intolerant to gluten and if you even have the genes.

Do this first and depending on your results you can move on to your kids.

The other alternative is just to eat a gluten-free diet and be healthy. Same for your kids.

What you decide is entirely up to you.

CarlaB Enthusiast
CarlaB
Posted

It sounds like you have something systemic going on. I would test for the whole celiac panel and don't get off gluten until you do. :)

If that isn't it, it can still be a toxin problem .... gluten can be a toxin for many of us who do not have celiac. www.biotoxin.info is a website that talks about toxins - mold, gluten, Lyme Disease.

Also, you might check this out - Open Original Shared Link

Whatever, you do, keep looking until you discover how to fix the problem. :)

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    • SamAlvi
      High TTG-IgG and Normal TTG-IgA

      By SamAlvi · Posted

      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
    • knitty kitty
      Son's legs shaking

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    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
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      Son's legs shaking

      By knitty kitty · Posted

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    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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