Too Many Things Asociated With Celiac Disease

[allergyprone]

Ok so I'm 18 and I've had celiac disease for about 2.5 years now. For about the 1st year I just followed a gluten free diet and felt better, I couldn't care less how I got it or what else could be wrong with me or even if my family had it or not. Well at about the 1.5 year mark I had a bad case of Hives it covered my feet, side, wrists, and it lasted forever (about 5 months) and my dr said it was no big deal, finally the hives subsided.

About 2 months ago I started feeling strange not like I had been glutened but just a bunch of unusual symptoms like a rash on my ears and foot (i do have dyshidrotic eczema, but it wasn't the same), being really tired, and a bunch of other things. When they first started I was working for a camp so I attributed it to that and now I just started college so it could all be stress but I don't know for sure.

I have been doing a lot of reading about the different things you can have/develope/are at risk for when you have celiac disease and started to realize that I haven't been tested for any of that and was wondering if anyone could tell me what we should be tested for so I can bring a list to my pediatrition (currently looking for an adult dr)or at least know what to keep an eye out for myself.

much appreciated

nicole

[Marilyn R]

Ok so I'm 18 and I've had celiac disease for about 2.5 years now. For about the 1st year I just followed a gluten free diet and felt better, I couldn't care less how I got it or what else could be wrong with me or even if my family had it or not. Well at about the 1.5 year mark I had a bad case of Hives it covered my feet, side, wrists, and it lasted forever (about 5 months) and my dr said it was no big deal, finally the hives subsided.

About 2 months ago I started feeling strange not like I had been glutened but just a bunch of unusual symptoms like a rash on my ears and foot (i do have dyshidrotic eczema, but it wasn't the same), being really tired, and a bunch of other things. When they first started I was working for a camp so I attributed it to that and now I just started college so it could all be stress but I don't know for sure.

I have been doing a lot of reading about the different things you can have/develope/are at risk for when you have celiac disease and started to realize that I haven't been tested for any of that and was wondering if anyone could tell me what we should be tested for so I can bring a list to my pediatrition (currently looking for an adult dr)or at least know what to keep an eye out for myself.

much appreciated

nicole

Hi Nicole, and welcome to the forum!

An Allergist can run a "Hive Panel" on you and do skin prick testing for other food allergies. I had the food skin prick testing but not the hive panel because I know what makes me break out in hives. (For me, it's OTC cold medications and decongestants, most antihistimines. I seem to be able to tolerate Zyrtec.

Are you careful with your selection of H&B products? Like lip balm, sun screen, lotions? The other usual culprits for feeling fatigued after being gluten-free for awhile are cross-contamination or the onset for new food intolerances like corn, soy, dairy, nightshades or glucose. And as you noted, stress doesn't add anything pretty to the picture. Good luck, hope you figure out what's getting to you.

[allergyprone]

I haven't seen an allergist because my dr doesn't think its necessary, I had a food allergy blood test and they said I didn't have any food allergies at all, although I do know most of the foods and other things that bother me

petroleum, prednisone, pinicillin, dust, wasp venom, spider venom, smoke, bananas, peanuts, beans, broccolli, cabage, coliflower, brussel sprouts, corn, some types of soy, eggs, and sometimes tapioca

i do my best to avoid these things

I have a very low chance of cc because I am living by my self and buying/cooking all my own foods, and I tend to keep towards fresh or canned and stay away from prepaired food

I have my doubts that it is stress related because I tend to react differently to stress (trouble sitting still and lack of focus) but I'm keeping my mind open to anything, I have been looking into type 1 diabetes because my grandmother on my dad side had it and so do all of her sibblings and the last time I was tested was before I had celiacs and prior to any symptoms (I don't want to seem like "I'm looking for something to be wrong with me" as my dr says but I am worring a bit

nicole

[pricklypear1971]

Your rash may be the "celiac rash" Dermatitis Herpetiformis. You may be reacting to trace gluten, or getting gluten from somewhere you think is safe. Or, your body may just be tossing the DH out there.

Dermatitis and eczema is common in autoimmune patients. Try using mild cleansers, etc. Keep a diary and calendar about when and what sets the rash off. Maybe that will help clue you in.

[sreese68]

I would find a new doctor. I bet if he were the one to live with hives for 5 months, he wouldn't call it no big deal! And if you're feeling off, you should definitely get checked out. I would keep a record of what you eat (just in case it's food related) and any symptoms you have: fatigue, rash, even just not feeling right. Hard data like this helps a doctor figure out what's going on.

Then ask people if they have a doctor they like. You want one who'll listen to what you have to say and think about it. And one who'll be open to your questions even if you're saying "I don't think I have (insert his suggestion) because

[pricklypear1971]

You may try a Naturapath who specializes on endocrinology. That's what mine does , and she really takes time to listen and to review your history. Made all the difference for me.

And here's how the good diary helps. Today I figured out I may be sensitive to salicylites. That's what happens when you cross notes on Little Debbie Swiss Rolls with Riceworks Sweet Chili chips and Barq's Red Cream Soda and Red Velvet Cake and strawberry Kool-Aid.

Salicylites sensitivity falls under DH. Duh. Dang.

[Marilyn R]

"I have my doubts that it is stress related because I tend to react differently to stress (trouble sitting still and lack of focus) but I'm keeping my mind open to anything, I have been looking into type 1 diabetes because my grandmother on my dad side had it and so do all of her sibblings and the last time I was tested was before I had celiacs and prior to any symptoms (I don't want to seem like "I'm looking for something to be wrong with me" as my dr says but I am worring a bit

nicole