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Newbie With Story & Some Questions

Guest AlabamaGirl

By Guest AlabamaGirl
in Celiac Disease Pre-Diagnosis, Testing & Symptoms

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Guest AlabamaGirl
Guest AlabamaGirl
Posted

Hello! I'll try to make this short but could use a little advice.

A while back my husband and I cut out all grains & I was amazed at all of the health problems (that I had originally attributed to other causes) that mysteriously cleared up. Skin rash: gone. PMS: gone. Mouth ulcers: gone ... this list could go on and on. Anyway, I noticed that whenever I would ingest grains again (even in the form of beer or soy sauce), I would have a SEVERE reaction -- itchy skin, sinus problems, running for the bathroom, etc -- a much stronger reaction than I had ever had (or noticed) before. (It seems I've read that this is normal??? Oh my goodness, I'll never forget that morning I ate that Kashi cereal.) I did a lot of research & came to the conclusion that I had some mild food allergy or intolerance.

I went to a board-certified allergist about a month ago, and he kind of dismissed my concerns and said to just quit eating the foods that I thought were causing a problem. He said that if I didn't have a severe reaction (i.e. shock), that there was really no way to confirm food allergies. Not sure if this is true, but I quietly left his office and went home & resumed my gluten-free diet with great success and much greater health.

Here's where I am now: I feel soooooo much better gluten-free and this is the only ingredient that I've noticed a reaction to, but wonder IF there could be some other foods that I'm reacting too but I've never noticed, or maybe I'm not reacting to gluten at all? How do you find all this out? Should I look for another doctor and get tested, or was my dr right when he said food allergy tests are a waste of money. I have pretty good insurance so it wouldn't be a cost issue. I can't believe the health difference when I cut out all gluten, so I'm pretty sure I have an issue there ... though I know all of you know much more about all this than I do.

Just starting to wonder if all this is in my head, though DH can see my hives when I eat that stuff and says I'm not crazy. :)

Confusing story and lots of questions but just hoping someone will have some advice for me. Thanks for reading my ramblings!

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mamaw Community Regular
mamaw
Posted

Hello

First welcome to this group. I don't think you are crazy. I have had hives and itchy skin, redfaced and a ton of pain. Had lots of it is this and that but I have never felt so good since I went off wheat & gluten.My dna come up with DQ2 but again that can be anyone with no problems. I did an endo & colonoscopy but I had been gluten-free for a month before hand as the doc didn't tell me any different so I assume that it was not correct.I now believe I am wheat & gluten intolerant. I do have other allergies as I'm senstive to everything on this planet but my symptons have gotten so much better since going gluten-free. I do do Bio- Set testing for other allergies with much success but it is a alternative approach and some don't beieve in alternative things but I have had many great success' with holistic treatments. I'm allergic to many drugs so I go the other way for treatment.

feel free to pm me anytime .

good luck, if you feel better not eating this poison (wheat & gluten) by all means don't eat it. I'm positive I feel better without it.....

mamaw

Ursa Major Collaborator
Ursa Major
Posted

Hi Alabama girl, and welcome to our board. You don't sound crazy at all, in fact, you're at least gluten intolerant, and probably have celiac disease. There is no point in official testing any more, as after being gluten-free for a while, all the tests would come back a false negative anyway, unless you'd go back to eating gluten for at least six months before testing.

The change in your health with the gluten-free diet is the best test anyway. Your health problems go away gluten-free, and come back when you consume gluten. Good enough for a diagnosis of at least gluten intolerance. What to do? Stay away from gluten for the rest of your life, as you will never outgrow a gluten intolerance. And since it is not an allergy per se, it will NOT show up with allergy testing.

It is possible that you're intolerant to other things besides gluten (like dairy, which is a common intolerance with celiacs), but not necessarily.

If you're happy with the results of the gluten-free diet, and have that great support from your husband, why bother with an 'official' diagnosis? You know what you know, and that's good enough. I'm in the same boat, there is no way I'd EVER go back eating gluten for any length of time just for a test, making myself deathly ill in the process.

mouse Enthusiast
mouse
Posted

Welcome to the forum. One member on this forum has kept an extensive food diary trying to figure out what she is reacting to. You might PM her and ask her how to start. I believe she is Rachel24, but if I am mistaken, someone who has a better brain then me, will do a correction. I also had the blood tests for allergens and I found it the most affective for results - at least for me. I have had the pin prick tests many times over the last 30 years and some of the same things showed up on the blood test. After I went gluten free my allergies became a pit and I did not know from what. The blood test showed me. And yes, I am actually allergic and not an intolerance. I only wish I was intolerant to some foods. Are you also making sure that you are using the gluten-free soy sauce?

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