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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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Jestgar Rising Star
Jestgar
Posted

Ummmm.... me too.

The differences I felt after stopping gluten were so astonishing I had a hard time believing that something so simple could be responsible for so many things. I decided to believe that I am not an idiot, and I have a very clear understanding of what my body is doing and all I have to do is believe it. I never went back to a specialist and I prepared an information packet for my PCP which I dropped off at her office.

If my head hurts, I know I have a headache. If I have diarrhea, I know I ate something bad. Why should I be less believing of my body when I'm suddenly tired, or my brain is on "pause", or everything hurts more? Just because these symptoms are less defined doesn't make them less real.

Trust yourself

AndreaB Contributor
AndreaB
Posted

If you've cut out all gluten and start to feel bad again then double check to make sure you haven't been glutened. The next two primary causes of problems are soy and dairy. Sounds like you are gluten intolerant at least. I had a blood test done for allergies which pinpointed problem areas. The elimination diet can also do that but is more time consuming. I didn't have allergic reactions that I knew of. I had the whole family tested by enterolab instead of having the rest of them have allergy tests. We may get those at a later time. I was interested in gluten/soy/dairy/egg primarily which enterolab tests for and tells you whether you are intolerant to it and need to leave off of it for life. It all depends on what you what to find out first. Both tests are expensive.

Daxin Explorer
Daxin
Posted

Sometimes I find I have to go into a doctor's office already having done my own research.

If your body is telling you that there is something not right with it, I would listen. I'm sure that's how 99.9% of the people on this forum have been diagnosed. Pestering their doctors because something wasn't right somehow.

If you suspect you have further food allergies, I would either try eliminating and replacing them from your diet, one at a time, until you figure it out on your own; or find a new doctor/allergist who is willing to listen and do some tests.

I have a similar problem w/ my doctor who keeps givingme stuff for my allergies that I can not have, because they contain gluten.

Keep doing your own research. Only YOUR body knows itself better than anyone else. It never hurts to get a so called professional oopinion from a doctor, but like I said, I try to go in knowing what I want him to look for.

Guest AlabamaGirl
Guest AlabamaGirl
Posted
If you suspect you have further food allergies, I would either try eliminating and replacing them from your diet, one at a time, until you figure it out on your own; or find a new doctor/allergist who is willing to listen and do some tests.

Hmmm, that's what I'm not sure about. It was pure accident that I found out I had an issue with gluten (at least I think that's what the culprit is), but so far I haven't noticed anything else causing a problem, though I haven't necessarily tried cutting anything else out so ...

I'm googling enterolab (?) right now, so if I can afford it, maybe they can help out a bit.

TCA Contributor
TCA
Posted

I found out by accident too. I went gluten-free for my nursing daughter who has celiac. After a couple months I started noticing how much better I feel and looking more into my symptoms and found out they could be cause by celiac. Mine was the blistery rash, joint pain, and gas. All gone unless I get gluten accidentally.

I'm an Alabama girl too! I live close to Huntsville, where are you?

My allergist is in Mobile - Dr. Leonard Caputo. He is amazing and can help you pinpoint these things. Yes, I do drive the 6 hrs because he is worth it. He had me to try a rotation diet. You eat all you want of one thing at one sitting, like dairy. You don't eat it again for 3 days. Keep a food journal while doing this and document the reactions. It's a pain and the diet has to be very simple foods, but it really is good at pinpointing things.

Welcome to the board!

AndreaB Contributor
AndreaB
Posted
Hmmm, that's what I'm not sure about. It was pure accident that I found out I had an issue with gluten (at least I think that's what the culprit is), but so far I haven't noticed anything else causing a problem, though I haven't necessarily tried cutting anything else out so ...

I'm googling enterolab (?) right now, so if I can afford it, maybe they can help out a bit.

Just in case you didn't find it it is www.enterolab.com. The cost for the tests we got (2) was $568 I think. They had dairy on a special with the gluten one for $369 and the soy/egg/yeast was $199.

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aikiducky Apprentice
aikiducky
Posted

I'd just like to add that if you're feeling just fine gluten-free, I don't really see the point in worrying about other intolerances. :) As far as I know other foods aren't likely to cause the kind of damage that gluten does, so if you don't feel ill, I would just enjoy that. Not trying to brush off your worries, but I think you could safely adopt a wait-and-see policy on this, keep gluten free and see how it goes. :)

Pauliina

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