Caliacs, Gluten Intolerance, Wheat Allergy Or Something Else? Help!

[naiiad]

Hello everyone,

Let me start off by saying that I haven't been diagnosed with caliacs or a gluten intolerance or a wheat allergy. I've been experiencing symptoms for a few months but haven't gotten around to going to the doctor.

I'm 20 years old. I'm not sure if this is relevant or not, but for about two years I was on a very unhealthy lettuce-and-water diet. I pretty much didn't get any carb or protein.

Now its last summer that I started to develop problems. I went through a period of major stress, literally half of my hair fell out (which was seriously traumatizing!!) and I started eating normally again. It was at this point that I started to develop really bad canker sores (I'd have 2-4 in my mouth at a time), a chronic yeast infection that would keep on coming back no matter how many times i treated it (argh so grosss!?!?!), chronic diarrhea, itchy skin and general aches and pains. All this was really freaking me out, especially the fact that I was 20 and going bald, and ever doctor I went to just rolled their eyes, told me not to stress, and advised that I drink lots of water for the canker sores.

Then I realized that all these symptoms where linked to my diet. I usually only ate dark pumpernickel bread, and I noticed that when I ate white bread the canker sores would get much worse. When I cut bread out all together for a few days, all the symptoms got better. So I did some research online and found out about gluten intolerance and caliacs. I stopped eating gluten/wheat and within two days the canker sores where gone. Within four days the yeast infection that Id had for months totally cleared up as well.

I've been (almost!) wheat free for about a month now and I feel so much better. But I find that when I accidentally eat wheat (like when my mom accidentally sprinkled white flour on top of my buckwheat bread) my mouth becomes instantly irritated, i get diarrhea and within a day I start getting nasty symptoms... down there. I'm so sensitive to it that I've stopped eating packaged food all together, because a lot of times they have traces of wheat that irritate my mouth the minute it touches my tongue.

SOO for my question. Ive been doing some research online, and it's not really clear whether my symptoms indicate a gluten intolerance, a wheat allergy, or caliacs or some other problem?

I want to know mostly out of curiosity, but also so I can know how to properly take care of myself. What do my symptoms sound like?

[ravenwoodglass]

Your symptoms do sound like celiac. Now for the really bad news, if you want a doctor derived diagnosis you need to get back on gluten. Even with a 3 month period on gluten you may still have a false negative on testing. One option is to go with Enterolab, they can test for the antibodies in the stool, however most doctors do not accept their testing as they have not, to my knowledge, had their research peer reviewed.

That said if you know that gluten is an issue you don't need a doctors permission to eat gluten free. You found a good place for info and support whether you decide to do a challenge or just live with 'self diagnosis'.

[naiiad]

Your symptoms do sound like celiac. Now for the really bad news, if you want a doctor derived diagnosis you need to get back on gluten. Even with a 3 month period on gluten you may still have a false negative on testing. One option is to go with Enterolab, they can test for the antibodies in the stool, however most doctors do not accept their testing as they have not, to my knowledge, had their research peer reviewed.

That said if you know that gluten is an issue you don't need a doctors permission to eat gluten free. You found a good place for info and support whether you decide to do a challenge or just live with 'self diagnosis'.

Woah! There's no way I'm going back on gluten, not for a day, not for three months!!

Since whatever I'm experiencing right now seems to definitely be a dietary issue, I'm just going to stick with being gluten/wheat free. Wheat-free, I feel better then I have in months... and I can eat and love food without getting excruciating painful cramps afterwards.

I'll talk to my doctor regardless, but this seems like something I can manage on my own.

Thanks for your advice!

[WheatChef]

From the sound of it you don't have good luck with doctors in your area so you may wish that factor into your decision of getting an official diagnosis that the testing process isn't exactly fool proof. Drink water to cure canker sores? The primary cause of canker sores is the immune system, whether the result of a virus or an autoimmune condition (like celiacs), not dehydration.

Autoimmune conditions also can cause fun things like hairloss, skin rashes, stress, gastric issues, recurrent yeast infections.

If you're not seeking a direct diagnosis you should think about getting checked for your vitamin and mineral levels which besides being destroyed on that no protein/no fat diet weren't exactly helped if you were having a gluten problem as well.

[naiiad]

Thanks for the reply wheat chef ^.^

I went to 100 different doctors, dermatologists, ENT specialist, some of whom didn't really say much, and others who suspected autoiumme, but got me tested for EVERYTHING (immune system function, lupus, MS, vitamin and mineral deficiencies etc but never caliacs) and said I was 100% fine. After all that stress of not getting any closure to what was happening to me, I attributed all my problems to anxiety/my previous bad diet/not drinking enough water LOL

Right now I'm not sure if my current (self-diagnosed) wheat intolerance is attributed to my previous diet and will go away once my body adjusts, or my bad diet triggered the more serious effects of an already pre-existing underlying caliacs. Either way, I don't want to go through the stress of

[naiiad]

I don't know if I want to go through the stress again of going to doctor to have them roll their eyes at me when I want answers and closure to what I've been experiencing. I know that being gluten-free has cured the yeast infection, the stomach pains, the joint cramps, and the painful canker sores. I'm just going to stick with this because its been working for me. Thanks!

[ravenwoodglass]

I don't know if I want to go through the stress again of going to doctor to have them roll their eyes at me when I want answers and closure to what I've been experiencing. I know that being gluten-free has cured the yeast infection, the stomach pains, the joint cramps, and the painful canker sores. I'm just going to stick with this because its been working for me. Thanks!

Coming from someone who went through a lifetime of illness and true hell for the last 15 years before diagnosis (my family thought I was dieing for the last 5 of them) I have to agree with your plan. There are benefits to having a firm diagnosis but there can also be downsides, like problems with health and life insurance. If your body has let you know that being gluten-free is working for you sticking with it if you don't want a challenge and furthur testing is a good plan IMHO.

[naiiad]

Thanks again for the advice

I live in Canada, so health care and testing is all free. It's just a matter of being of tired of going to doctors who haven't been able to help me. I guess next time I see my doctor I'l ask her about it, but right now it isn't necessary.

[Skylark]

Sounds familiar. My doctor offered tests but I just wasn't interested in eating wheat again. It makes me too sick.

You sound more like you have a wheat allergy than celiac. The instant mouth irritation is called oral allergy syndrome and is a true allergy. You can read about it online. Wheat is an unusual trigger for oral allergy syndrome, but it sure sounds like your problem. Often a food that causes oral allergy syndrome will also trigger diarrhea from an intestinal reaction. If you itch with hives or just redness, rather than the blistered dermatitis herpetiformis rash that celiacs get, that's allergy too.

You might talk to your doctor about allergy, as you can be blood and skin tested for the wheat allergy without consuming it and you might want an epi-pen if you test positive. You also might be able to use an antihistamine if you get into wheat by mistake.

There could also be celiac issues, since you have the canker sores, but autoimmune reactions are not generally immediate like yours.

[naiiad]

Thanks skylark ^.^

The instant mouth irritation ARE the canker sores. They start to develop a few minutes after eating wheat, and can last up to two days. I didn't know though that an instant mouth reaction was a symptom of allergy and not caliacs. I ate some pre-seasoned chicken earlier today and developed a bad reaction, including hives... so maybe it is an allergy?

I think I will go to the doctor. I know for sure that this is dietary, but maybe the doctor can help me narrow things down. Thanks!

[ravenwoodglass]

Thanks skylark ^.^

The instant mouth irritation ARE the canker sores. They start to develop a few minutes after eating wheat, and can last up to two days. I didn't know though that an instant mouth reaction was a symptom of allergy and not caliacs. I ate some pre-seasoned chicken earlier today and developed a bad reaction, including hives... so maybe it is an allergy?

I think I will go to the doctor. I know for sure that this is dietary, but maybe the doctor can help me narrow things down. Thanks!

The mucous membranes in the mouth are the first place the gluten enters your body. I had a dentist deliberately gluten me by rubbing by gums with something. I have DH and the blisters broke out within a half hour of that. It was another day or two before the gut stuff hit. However it is quite possible to have an allergy to wheat and celiac. An allergist can test for a true allergy.