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Hi. I am 36  and new to all of this. I am awaiting an appointment with a doctor to discuss possible Gluten Intolerance or Celiacs disease. I have all the symptoms: rash, bloating, pain, low on Vit. D and B12, diarrhea/constipation, indigestion, tingling in fingers, cravings, etc. 

 

I also have a history (since I was 9 years old) of colon polyps. 

 

This past week has been the worst with stomach pain, bloating and the rash. I'm so tired of being itchy. I've gotten itchy before but this time is the worst. My neck, scalp, behind my knees, arms, and stomach are covered in the rash. 

 

Anyway, hoping to find answers soon. I want to feel normal again. 

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Welcome Missy!

Make sure you read the Newbie 101 thread and ask any questions you may have. The diagnosis process for Celiac Disease can be frustrating - yet it sounds like you are aware of many of the often dismissed symptoms.

Here are the necessary tests - bring a list - just in case your doc is not up to speed....

Total Serum IgA

tTG - IgA and IgG

EMA - IgA

DGP - IgA and IgG

Nutrients = B1, B2, B6, B12, D, K, Iron, Ferritin, Copper, Zinc

Complete Blood Count

Complete Metabolic Panel

AND...you mentioned itching - if there is an active rash - a dermatologist that knows how to take a sample for celiac - dermatitis hepiformus -DH-apologies for sp?

Good luck to you :)

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Welcome Missy!

Make sure you read the Newbie 101 thread and ask any questions you may have. The diagnosis process for Celiac Disease can be frustrating - yet it sounds like you are aware of many of the often dismissed symptoms.

Here are the necessary tests - bring a list - just in case your doc is not up to speed....

Total Serum IgA

tTG - IgA and IgG

EMA - IgA

DGP - IgA and IgG

Nutrients = B1, B2, B6, B12, D, K, Iron, Ferritin, Copper, Zinc

Complete Blood Count

Complete Metabolic Panel

AND...you mentioned itching - if there is an active rash - a dermatologist that knows how to take a sample for celiac - dermatitis hepiformus -DH-apologies for sp?

Good luck to you :)

Thank you for the information. I'm feeling pretty miserable today. I ate really well yesterday. However, last night, my daughter made baked potatoes and asked if I wanted half of one. I thought potatoes were okay so said yes. However, I'm not sure what she put on them because within an hour, I was bloated, in pain and my rash is spreading today. I'm tempted to just live on fruits and water for a few days. I'm scared of eating anymore. 

 

About the rash, from my research of it, DH has blisters. Mine is just clusters of red dots that are very itchy. Some are larger than others and the rash is raised. But there are no blisters. 

 

Anyway, I will read more on here as I  get time and wait to see my doctor. 

 

Thank you everyone. 

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Thank you for the information. I'm feeling pretty miserable today. I ate really well yesterday. However, last night, my daughter made baked potatoes and asked if I wanted half of one. I thought potatoes were okay so said yes. However, I'm not sure what she put on them because within an hour, I was bloated, in pain and my rash is spreading today. I'm tempted to just live on fruits and water for a few days. I'm scared of eating anymore. 

 

Missy - have you already eliminated gluten from your diet? It's possible that you could have false-negatives on your tests if you aren't eating gluten, and the doctor may advise you to start eating gluten again before having any tests done. But wait and talk to the doctor first - my doc advised me not to go back on gluten because it made me so sick, and looked at other evidence to diagnose celiac.

 

Since potato made you react, have you looked into the possibility of a reaction to nightshades? Nightshade sensitivity has a lot of the same symptoms of celiac, and the two can exist together.

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Missy - have you already eliminated gluten from your diet? It's possible that you could have false-negatives on your tests if you aren't eating gluten, and the doctor may advise you to start eating gluten again before having any tests done. But wait and talk to the doctor first - my doc advised me not to go back on gluten because it made me so sick, and looked at other evidence to diagnose celiac.

 

Since potato made you react, have you looked into the possibility of a reaction to nightshades? Nightshade sensitivity has a lot of the same symptoms of celiac, and the two can exist together.

I was going to eliminate gluten. I did for 2 days. My rash actually started clearing up. Yesterday, while at the doctor with my daughter, I asked the N.P. about my rash and told her I was going to get tested for Celiacs due to other symptoms. She stated it was a very good idea (waiting on insurance at this point) but also said to NOT go gluten free so the tests are accurate. So I ate some dinner last night and had a few beers with my girlfriends. Today, rash is worse, I look pregnant, I'm sluggish and I'm in pain. The rash is now getting some blisters. I just hope the insurance gets here this week so I can get to the doctor quickly. If I still have the rash, I'll make an appointment with a derm. 

 

This is ridiculous. I feel horrible and I've never looked so bad in my life. I wish I could get the test and NOT have to consume gluten but I don't want to go through all this to get a false negative. 

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Hi Missy...you need not overdo the gluten consumtion -- there is some arguement about how much gluten is enough, between 1/2 to 2 slices of bread a day is your target -- some have had a bit of luck eating their daily gluten in the evening to help limit the worse effects to sleep hours.

 

I find that a bath with a half a cup of baking soda can really calm the severe itch.

 

Hang in there :)

 

Edited to add:  Just re-read your post -- if you are in pain -- make that bath 1 or 2 cups epsom salt and a 1/2 cup baking soda for the itchies.

Edited by GottaSki

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Hi Missy...you need not overdo the gluten consumtion -- there is some arguement about how much gluten is enough, between 1/2 to 2 slices of bread a day is your target -- some have had a bit of luck eating their daily gluten in the evening to help limit the worse effects to sleep hours.

 

I find that a bath with a half a cup of baking soda can really calm the severe itch.

 

Hang in there :)

 

Edited to add:  Just re-read your post -- if you are in pain -- make that bath 1 or 2 cups epsom salt and a 1/2 cup baking soda for the itchies.

Yes, I think I am definitely going to stick to mainly gluten-free and just do the bread. I'll also do the bath. We keep Epsom salt on hand for my daughter, so I'll add that to my bath tonight. Thank you for all the answers everyone. My insurance paperwork should be here in the next week so I can get into the doctor's and hopefully get answers soon. 

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Well, the rash was even worse yesterday so I went in to be seen. They gave me some anti-histamines and a shot to relieve symptoms. It's helped a little, mainly I just slept for 14 hours, ha! I did have a bit of gluten at breakfast this morning and already feel more itchy as well as nauseous and bloated. So I think that I'll be gluten-free the rest of the day. 

 

Also about the nightshades. I forgot but when I was little, anytime I ate potatoes or tomatoes, I would break out in hives and get really sick. So I am taking those foods off my list as well. 

 

The doctor I saw yesterday about the rash was very agreeable about me doing further checking into food allergies or Celiac, especially with my colon issues I already have. So that's  a good start. 

 

Again, ty for all of the advice. 

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    Celiac.com 06/23/2018 - If you’re looking for a great gluten-free Mexican-style favorite that is sure to be a big hit at dinner or at your next potluck, try these green chili enchiladas with roasted cauliflower. The recipe calls for chicken, but they are just as delicious when made vegetarian using just the roasted cauliflower. Either way, these enchiladas will disappear fast. Roasted cauliflower gives these green chili chicken enchiladas a deep, smokey flavor that diners are sure to love.
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    Jefferson Adams
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    • For the brown rice, it could be the fiber (assuming you mean whole grain rice, which still has husk on it). If I have been glutened recently, whole grain brown rice and other fibrous foods are not digested well by my GI tract. Because I get non-GI symptoms, I am quite sure that the cause is not gluten. You might stay away from whole grain rice for a bit, or transition slowly (mix white/whole grain in increasing proportions as tolerated). For pork, it is unlikely that the type of feed would have an influence on the gluten content of the meat. Gluten is not transferred into the muscle (meat) or eggs of animals. It stays in the GI tract. There could be some small chance of contamination from the GI tract during butchering. I don't know much about commercial butchering/abattoirs, but I think that this is heavily guarded against due to the risk of fecal contamination. Sometimes, the thing we think is making is sick is in fact not - sometimes it is something else that we do in association with that food. Perhaps there is a seasoning that you use with pork, or perhaps you use certain kitchen tools for pork that are contaminated. I used to always get sick when I cooked butternut squash. It was because I was using a hacksaw to cut them, which was contaminated with drywall (drywall contains wheat). If you are buying your meat from a small, independent butcher (where they bread/flour meat in-store), you might think about switching to buying big box grocery meat. At big box grocery stores, they just section up the meat that is pre-butchered. You could also be allergic to pork - this is rare, but some people are (especially those who are allergic to cats). Hope this helps.  
    • What pigs eat would note really get to your eating their meat, this might be different with something that you can not clean out well or eat part of the digestive tract like farmed crayfish, shrimp, or poorly cleaned fish/chicken. But pork...unless your eating part of the intestines the meat should not bother you if they ate even pure wheat.

      Brown rice, this could be a issues with CC, starches, fiber etc.  There have been major CC issues with grains and legumes in recent months. I suggest sticking to a safer brand like Lundenburg and or visually sorting your rice, and washing it before cooking it. Again it could also be a fiber issues or starches.

      Other thoughts some people bit by a lone star tick develop allergies to pork and or beef.

      Some people are just intolerant to certain foods, and we can develop many food sensitivities to just about anything with this disease. Often new or certain food intolerance can be linked to something we ate when we ate gluten and our body just has a associative issue that might go away in a few years. https://www.mindbodygreen.com/articles/are-food-sensitivities-for-life
    • Brown Rice and pork are meant to be gluten free yet they set me off. Pork I reckon is due to them eating cereals.  Brown rice I have no idea although white is fine . Does anyone else get set off by them or is my body just strange?
    • I live in a town with hy-vee grocery stores. If you go to their website https://www.hy-vee.com/meal-solutions/special-diets/default.aspx and click on the gluten free foods link you will find every hy-vee product that is gluten free. I have had many and have never had a problem.  This list is for Hy-Vee products so it will not include other companies. I seem to survive off a lot of PB and J sandwiches when traveling. 
    • Hi Mavis, Celiacs are often low on Vitamin D, vitamin B-12, and sometimes iron, and selenium. Wheat is pretty popular here too.  But there are other options like rice and buckwheat, quinoa, etc.
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