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Too Many Things Asociated With Celiac Disease

allergyprone

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allergyprone Contributor
allergyprone
Posted

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

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Marilyn R Community Regular
Marilyn R
Posted

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 Contributor
allergyprone
Posted
  • Author

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 Community Regular
pricklypear1971
Posted

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 Enthusiast
sreese68
Posted

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 Community Regular
pricklypear1971
Posted

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 Community Regular
Marilyn R
Posted

"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

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    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

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    • trents
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      By trents · Posted

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    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
    • trents
      Accuracy of testing concerns

      By trents · Posted

      The biopsy looks for damage to the mucosal lining of the small bowel from the inflammation caused by celiac disease when gluten is ingested. Once you remove gluten from the diet, inflammation subsides and the mucosal lining begins to heal. 
    • Theresa2407
      Doctors and Celiac.com

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