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I Thought I Just Ate A Gf Dinner...

lorka150

By lorka150
in Coping with Celiac Disease

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lorka150 Collaborator
lorka150
Posted

I am highly suspicious that I have celiac disease, so after some recommendations from some nice people from this board and personal debating, I have decided to do a gluten free diet and seeing how I feel.

My question is, I've been VERY careful and I know I did not consume anything with gluten today (or yesterday, or for about five days). I haven't even used anything prepared - everything has been fresh (except a salad dressing), becasue I've been so worried.

Anyway, after dinner today (fresh tilapia, a salad with lots of veggies and a gluten free dressing from President's Choice that I called about it, and steamed green beans), I got very tired, almost immediately. Also, I feel dizzy... it's weird, because I didn't feel like this before dinner.

Does this have anything to do with the disease? Does it happen no matter what I eat, because I just started this new way of life?

In addition, about ten minutes ago, a lady from celiac Canada called me (I called last week inquiring her opinion about going gluten free, but they didn't call back til now) and she recommended NOT going gluten free. Now I am so confused, but I think I might already be feeling a little better.

I'm so confused. Any help, please?

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Guest nini
Guest nini
Posted

you are going to hear opinions from both sides of the spectrum regarding self diagnosis. If you are comfortable with self diagnosing based on how you respond to the diet, then by all means continue on with the gluten-free diet. BUT if you are going to want a definitive diagnosis from a Dr. you are going to have to be consuming gluten (and lots of it) in order for the testing to be accurate, and even so, you may still get a false negative result.

My personal opinion is give the diet a good try for a while and see how you do. You will make some mistakes and if there is damage there will be some good days and bad days until your system heals. It's very possible that it's the roughage that is making you feel a little ill after eating, especially if you do have celiac and have significant damage to the intestines, then your system may just be having a hard time with the roughage.

If after a significant amount of time, say 3 or 4 months, you aren't feeling any better, then I would say reintroduce gluten for at least 3 months and then go see a specialist. But if you are feeling even a small bit better, keep at it and while you may never know if it's truly celiac, you will know that your body doesn't like gluten.

Good luck and keep us posted!

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      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 😅
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      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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