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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

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Hi, My daughter is 5 and just got diagnosised 12 weeks ago. We've seen a dramatic change in her life from being a kid with chronic and awful constipation to a child who is now healing and feeling well.

With her finally starting to feel better I now willing to try to address her constant complaints about her skin.

She says she itches all over. She has some bumps on the back of her arms and some on her belly that always seem to be there. They got a little better and her skin seemed smoother the first couple of weeks on the gluten free diet.

The peditrician has said it's dry skin but I'm not sure since she is so adamant about it bothering her. I've tried heavy duty moisturizer with seeing no improvement over the years.

We've had her allergy tested and nothing came up. The only thing that did show was crazy IGG levels (50) the second time she got tested for Celiac. The first time she was a weak positive and the doctor dismissed it since she was a constipated kid. Wrong.

So, I'm wondering who do I ask about this. I put a hydrocortonsone cream on it and it she can settle down to sleep especially at night.

Do I ask the GI if it's related to Celiac? Go to a dermatologist, go back to the peditrician. It took a lot of doctor visits to get her diagnosised and I don't want to be missing something here.

Thanks for the input.

Suzanne

Elizabeth's mom. Finally off heavy duty laxatives after 5 years

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Hi Suzanne,

I would take your daughter to a dermatologist... my first thought is "chronic urticaria (hives)." It's a pretty common condition and it could explain the constant itching. This website is really helpful:

www.urticaria.thunderworksinc.com/

If it is CU there are several things you can try... antihistamines, a cream that you can mix yourself using nasalcrom (much easier on the skin that hydrocortisone), a low-histamine diet... but if it is CU and those treatments don't work it's definitely worth it to be in touch with a good dermatologist. There are quite a few prescription medications to try.

Good luck! Great news about the constipation :)

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She says she itches all over. She has some bumps on the back of her arms and some on her belly that always seem to be there. They got a little better and her skin seemed smoother the first couple of weeks on the gluten free diet.

The peditrician has said it's dry skin but I'm not sure since she is so adamant about it bothering her. I've tried heavy duty moisturizer with seeing no improvement over the years.

First off, congratulations on your daughter feeling better. The diet can be tough at times...but the fringe benefits of feeling well are more than worth it!

I agree with a pp about seeing a dermatologist to find out what kind of rash your dd has. I also would suggest that you take the doctor's opinion on other allergies with a grain of salt. If the rash got better off gluten, but is still there.....you may have another intolerance (or allergy) at work. The tests are never 100% accurate. Only dietary trial is. My dd never tested positive for soy allergy and yet she reacts to it more than her actual egg or milk allergy. Gluten never came up positive on any tests and yet the slightest amount sets off a 12 hour long acute reaction with a couple days of residual effects.

We've also discovered that certain laundry detergents, soaps, sunscreens (which are supposed to be "safe") will cause skin reactions that resemble what you are describing. I can't begin to describe how miserable it can be to be allergic to a laundry detergent/fabric softener and to sleep in a bed with sheets laundered in it. We experienced that at my sil's house. The next time we visit, I'll be bringing my own sheets and pillows! :o

The point being, there are a lot of factors to rule out. Keep looking for the underlying cause and don't resign yourself to this being a "fact of life". It may not be.

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My son's chronic severe eczema--which did NOT respond to the cortisone creams, even when my fingers went numb--disappeared after a several weeks on a 100% gluten-free diet.

All the doctors agreed (before this) that it had nothing to do with anything he ate. Each one wanted to give him stronger and stronger cortisone creams. Then they wanted him on some kind of allergy med.

They were wrong. And I have lost faith in dermatologists in general--but hopefully, more and more of them will become aware of the connection between skin and gluten.

Interestingly, my son's eczema began while he was consuming only breast milk. My going on a gluten-free, casein-free diet did nothing for his eczema. According to the dermatologist, his eczema was a reaction to his 4-month shots, though she couldn't narrow it down to which one (he'd received 3 or 4).

So we never expected his eczema to clear up from diet--but repeat challenges confirmed the gluten reaction.

Something else for you to look up might be dermatitis herpetiformis.

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Fiddle-Faddle - how many weeks did it take for your son's skin to start to show signs of improvement?

My husband and son both have celiac disease. Now, my 2 1/2 year old daughter has persistent eczema (4 months now, bleeding, scratching, etc..), but no apparent GI or growth issues, like my son had. We had her tested for Celiac recently and probably have a week or two to wait for the results. I'm going to start her on a gluten-free diet this week to see what happens. She was allergy tested (no food allergies showed up), has prescription creams from a dermatologist, etc.. But, the eczema seems to flare up so quickly, that I just can't stop myself from thinking that it must be diet related (despite doctors thinking it can't be if allergies didn't show up in testing).

The eczema also turns red sometimes without reason -- all the patches will be red -- but it's not after a bath or sweating, but random times, which makes me think it's diet related. Has anyone else experienced that?

Thanks for your advice!

Betsy

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Betsy, it took about a week to be sure that we were seeing consistent results and not the "waxing and waning" we were seeing prior to going gluten-free. In retrospect, that waxing and waning could have been from diet--we had always eaten a lot of rice anyway.

My son had no growth issues--only rash and tummy aches/diarrhea. His eczema DID turn bright red, often. It seemed to be when it was hot, or when he'd been scratching it--but not always. Sometimes I even wondered if there was some kind of rebound effect from the cortisone creams, where it would seem to get better--but then get twice as bad.

If the doctors think it can't be food-related if it didn't show up in allergy testing, then they are idiots. Celiac disease (as you probably know, but they don't seem to) is not an allergy, and will not show up in allergy testing.

I think the gluten-free diet is a very good idea, since you've already had celiac testing done.

There are a bunch of easy-to-miss sources of gluten, like barley malt (in almost all mainstream cereals, except the non-wheat Chex line, Honey Kix, Trix, Cocoa Pebbles, and Fruity Pebbles), bread crumbs in tuna salad, soy sauce in rotisserie chicken, etc. READ LABELS--many cereals have recently reformulated to be gluten-free, and the old boxes are still out there.)

If you feel overwhelmed with label-reading, please post! Many of us have been through this with ourselves and our kids, and would be glad to post what worked for us, answer questions, etc.

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Thanks, Fiddle-Faddle! I completely agree with you about allergies not being the only food-related cause of issues like Eczema. Yes, my allergist thought that Celiac wouldn't cause it, but I know it's worth a try. Appreciate your offer of assistance re: foods. My son and husband were diagnosed about 3 years ago... so I'm pretty up-to-date on things. My daughter is gluten free at home... eats gluten snacks at daycare and gluten when we go out to eat. So, it's not a big switch for her.

LOVE the Chex line! Have even written them thank you letters... General Mills / Betty Crocker is coming out with gluten-free cake mix, brownie mix and cookie mix this summer:

http://www.bettycrocker.com/products/glute...gluten-free.htm

Sure they'll be advertising on Celiac.com...

Thanks so much for your advice!

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Thanks everyone for some of the suggestions. We've been trying the cream that one of the parents suggested. It was easy to mix up.

Results have been less itching complaints but the skin is still bumpy and rough to the touch.

My guess is that it might take a while to see improvements on the worse areas.

Just a heads up for other parents desparate to help there newly diagnosised kids. I started giving my daughter vitamins to try to address her fatigue and my concern about poor absorption of calcium. The resuts were some digestive issues. My GI finally offered to do some blood work this looking at all her vitamin levels so now we will have a sense of which ones she really needs.

It was seeing her so uncomfortable again. A good clean out using lots of miralax and ennamas did the trick. Just a heads up not to make the same mistake I made.

Suzanne

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My 4 year old daughter's story is similar to yours. Although we have not had much success after 3 months trying a gluten free diet. I say trying because it has been a struggle to be 100% gluten free for us. I have many sabbateurs in my life that just don't 1) understand why I am gluten freeing my daughter 2) don't want to learn about gluten free because it's too difficult and complicates their lives.

I'm curious to hear how your now likely 3 year old daughter is? Please share your experience with me....

Thanks!

Anne

Fiddle-Faddle - how many weeks did it take for your son's skin to start to show signs of improvement?

My husband and son both have celiac disease. Now, my 2 1/2 year old daughter has persistent eczema (4 months now, bleeding, scratching, etc..), but no apparent GI or growth issues, like my son had. We had her tested for Celiac recently and probably have a week or two to wait for the results. I'm going to start her on a gluten-free diet this week to see what happens. She was allergy tested (no food allergies showed up), has prescription creams from a dermatologist, etc.. But, the eczema seems to flare up so quickly, that I just can't stop myself from thinking that it must be diet related (despite doctors thinking it can't be if allergies didn't show up in testing).

The eczema also turns red sometimes without reason -- all the patches will be red -- but it's not after a bath or sweating, but random times, which makes me think it's diet related. Has anyone else experienced that?

Thanks for your advice!

Betsy

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Hi - I am curious to hear how your daughter is. My 4 year old has very similar symptoms. Both she and I have not slept in 4 years (ok less than 20 times in 4 years). I've turned to a natruopath who has lead me to consider Celiac sensitivity/intolerance. I am struggling keeping my daughter gluten and caesin free as the ND recommends.

Please share your experience I could really use the help right now as my family thinks I am taking this too far.

Thanks!

Anne

Hi, My daughter is 5 and just got diagnosised 12 weeks ago. We've seen a dramatic change in her life from being a kid with chronic and awful constipation to a child who is now healing and feeling well.

With her finally starting to feel better I now willing to try to address her constant complaints about her skin.

She says she itches all over. She has some bumps on the back of her arms and some on her belly that always seem to be there. They got a little better and her skin seemed smoother the first couple of weeks on the gluten free diet.

The peditrician has said it's dry skin but I'm not sure since she is so adamant about it bothering her. I've tried heavy duty moisturizer with seeing no improvement over the years.

We've had her allergy tested and nothing came up. The only thing that did show was crazy IGG levels (50) the second time she got tested for Celiac. The first time she was a weak positive and the doctor dismissed it since she was a constipated kid. Wrong.

So, I'm wondering who do I ask about this. I put a hydrocortonsone cream on it and it she can settle down to sleep especially at night.

Do I ask the GI if it's related to Celiac? Go to a dermatologist, go back to the peditrician. It took a lot of doctor visits to get her diagnosised and I don't want to be missing something here.

Thanks for the input.

Suzanne

Elizabeth's mom. Finally off heavy duty laxatives after 5 years

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Hi, My daughter is 5 and just got diagnosised 12 weeks ago. We've seen a dramatic change in her life from being a kid with chronic and awful constipation to a child who is now healing and feeling well.

With her finally starting to feel better I now willing to try to address her constant complaints about her skin.

She says she itches all over. She has some bumps on the back of her arms and some on her belly that always seem to be there. They got a little better and her skin seemed smoother the first couple of weeks on the gluten free diet.

The peditrician has said it's dry skin but I'm not sure since she is so adamant about it bothering her. I've tried heavy duty moisturizer with seeing no improvement over the years.

We've had her allergy tested and nothing came up. The only thing that did show was crazy IGG levels (50) the second time she got tested for Celiac. The first time she was a weak positive and the doctor dismissed it since she was a constipated kid. Wrong.

So, I'm wondering who do I ask about this. I put a hydrocortonsone cream on it and it she can settle down to sleep especially at night.

Do I ask the GI if it's related to Celiac? Go to a dermatologist, go back to the peditrician. It took a lot of doctor visits to get her diagnosised and I don't want to be missing something here.

Thanks for the input.

Suzanne

Elizabeth's mom. Finally off heavy duty laxatives after 5 years

Hi- I know that this is an older post, but I just joined the forum and have a daughter who is 6 & was recently diagnosed with Celiacs with a blood test. This comes after two years of unexplained itching all over with no rash. It is usually worse at bedtime and we frequently will give her Benedryl to help. No lotion seems to help, and we have been completely organic for over a year now too. Only using California Baby Sensitive Skin lotion and bath wash. I have never been able to find an answer for this. We have seen multiple allergists, nutritionists, etc., etc. Doctors always told me it was because she was a red head and just extra sensitive...I'm hoping with her new diet that this will subside. She has only been gluten free for 5 days so far. Has your daughter's itching gotten better??

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I am actually a red head and I have had severe itching all over, with no rash for the past three years. I am 24 and been to every specialist, had every blood test, biopsy, etc to no avail. I am suffering daily and just tried going gluten-free. It has only been one week and I dont see any change but am hoping with time and commitment, it will help.

Has your daughter's itching gotten any better? Please let me know!

Meghan

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I am actually a red head and I have had severe itching all over, with no rash for the past three years. I am 24 and been to every specialist, had every blood test, biopsy, etc to no avail. I am suffering daily and just tried going gluten-free. It has only been one week and I dont see any change but am hoping with time and commitment, it will help.

Meghan

Hi Meghan and welcome :)

That so frustrating--have you tried switching to unscented laundry detergent, fabric softener, soaps and hair care? I had that itching after going gluten-free and found that I was suddenly sensitive to those sorts of things. Worth a try if you haven't already.

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Hi Meghan and welcome :)

That so frustrating--have you tried switching to unscented laundry detergent, fabric softener, soaps and hair care? I had that itching after going gluten-free and found that I was suddenly sensitive to those sorts of things. Worth a try if you haven't already.

Yes :( Unfortunately, I did all that in the first few weeks it started....now three years later it is worse than ever!!! I have traveled all over the country going from doctor to doctor....the weird thing is my body has no rash so doctors dont "SEE" anything wrong with me. Still searching...

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