Celiac disease -- please help -- friend is really struggling

[momof10]

I have a dear friend who has been diagnosed with celiac disease and has been struggling with it for a couple of years now. She's been completely gluten-free for 8-9 weeks now. Just last week she broke out with blisters and sores all over her body except for the bottoms of her feet and her face. She had problems earlier with a couple of them on her legs, but nothing like this. She said it itches like crazy. This, along with some other problems she's facing in her life are pushing her over the edge. She was in tears last night when she told me she just wants to go home to heaven - that she can't take it any more.

She's been trying to find out what the cause is, how to stop it, etc. to no avail. Someone said that this happens in 1 out of 10,000 cases. Her words, "So you know who is going to get it with those odds....me."

Does anyone have any ideas or any websites, etc with info for her?

[Karin]

Yes. First, she may wish to have an ELISA test done to see if she has other food sensitivities. My dd had this done and it has helped immensely. Food sensitivities measured by this test (a blood test) measure immune reactions to foods that are not allergies.

Is she eating oats? Some say that people with celiac can eat oats. If she is, she should stop for now. Also, gluten is hidden in many things, such as natural flavourings.

There is a great diet that can help many with celiac and similar things called the specific carbohydrate diet. However, it wouldn't work easily for those who have certain food allergies. It allows the gastrointestinal tract to heal, which it won't always do when simply on a gluten free diet.

[Michele in New Zealand]

Hi

It sounds like she could have Dermatitis Herpetiformis which is an intolerance/allergy/celiac thing to gluten.

Is she absolutely positive that she is gluten free. Did she buy new pots and pans, new toaster, new bakeware? Are her work surfaces free of gluten? Does she share the kitchen with a person who does use gluten? If so, does she have separate spreads such as butter, honey etc? Any cross contamination occurring will be have set off a DH reaction.

Another point is that a GF diet takes longer than a few weeks to fully work. My dd was GF for a year before I felt that finally, her body had healed. I was about 6 months. Dd was also cross contaminated just before Xmas and it has taken until now to completely recover.

If it is DH there is a drug called Dapasone she can take. It is very toxic and requires very close monitoring, regular bloods etc.

My feeling is that if it is DH, she has possibly been exposed to hidden gluten and has had a DH flare.

My favourite gluten website and forum is http://www.glutenfreeforum.com/ and http://www.celiac.com

There is truckloads of information on both those websites.

The best of luck for your friend. Let me know how she gets on.

Michele.

[Jenny in Atl]

My two dd's have celiac. Please send her a big ((hug)). I don't think I can add much more to the two above posts; I think they covered it. She needs to really be careful and make sure she is 100% GF. And I totally agree about looking for further sensitivities, either to food or even something that might be coming into contact with her skin. There are a ton of body products that have gluten (shampoo, toothpaste, etc). Is there a support group in her area. I know there are a number online as well. It can help talking to others going through the same thing. http://health.groups.yahoo.com/group/SillyYaks/
Is one I recommend.

Wishing her a quick recovery from the blisters!:(

[LisaTheresa]

My son has been gf for 5 years now. I definitely agree with getting tested for other food allergies and eliminating oats if she is not already doing so. If she does not get results after doing those things, I think the Specific Carbohydrate Diet would definitely be worth looking into.

I have heard people say that once they are on the gf diet, they become much more sensitive when they ingest gluten. It really can take some time for her body to heal. If she has DH, I believe she could react to gluten even if she just touches it.

So sorry to hear she is having such a tough time!

Lisa

[Karin]

This post reminds me that sometimes it's helpful to take something like GlutenEase for a while after you stop eating gluten. This was recommended to me recently. While I do not have celiac (was tested), I cannot digest gluten. I tried gluten again with digestive enzymes thinking I could then handle it. Instead of getting intestinal problems, I suffered severe depression symptoms! Some people just cannot tolerate gluten. Apparently wheat can cause depression in some people (I read about it--I couldn't figure out why I was suddenly so depressed), and also gluten can cause anxiety in some.

[momof10]

if anyone else has any helpful suggestions, I'd appreciate it. I'm going to pass this info on to her.

I don't believe she's seeing a medical dr. about this but is taking herbal supplements, etc. recommended by the shop that sells those products (they sell products like Daniel Chapter One, etc.). Would she have to go to an MD to have the testing done that you are describing?

[Karin]

For the ELISA test a doctor. It was a wholistic MD who prescribed this for my dd, and the test was paid for by our medical insurance, even though she wasn't covered by it. The doctor needs to be familiar with this, because my MD won't prescribe it (he's not familiar with it) and also they need to know which conditions the insurance company will consider a medical need for the testing. For allergies, an allergist is a good idea. Skin testing is good for environmental allergies, but not as reliable for food allergies. Also, it won't pick up sensitivities as they don't cause hives even though they can be caused by the immune system. One of the differences between an allergy and a sensitivitie is when the reaction occurs. An allergy generally occurs within 8 hours and has to be one of a specific set of symptoms (hives and anaphylactic (sp) reactions are 2 of the included reactions) whereas sensitivities generally take up to 72 hours to occur and can have a very wide variety of reactions often difficult to pinpoint (including behaviour, migraines, etc). I'm guessing that if she knows she has celiac disease she had a test done by an MD. That's the only way to be 100 percent sure there is celiac sprue, but celiac is not the only condition where gluten isn't tolerated (this last is a reiteration, but finishes the thought, lol.)

[Lisa in Jax]

The stuff she's describing fairly screams "allergies!"

We just did "AcuSet" allergy elimination acupuncuncture. It helps with many allergies -- though it won't cure celiac disease. It *could* reduce her sensitivity to glutens to help with those times when she unintentionally is exposed, though.

My kids, who had been gluten- and casein- (and color- and corn syrup-) free for 2+ years are now back on normal diets. No more food elimination! I'm not suggesting that it will make your friend non-celiac, but it may help reduce the "load" on her allergy system to let her feel better.

The doc we saw was the person who invented the technique (it's modified from the older NAET treatments), and I can tell you -- it works. My kids are doing better than ever.

The acupuncturist is in Florida (between Daytona and Orlando). Her website is below.

HIH,

Lisa
http://www.acudebra.com

[Misty]

I second the ELISA food sensitivity testing to rule out any other food intolerances or sensitivities.. We used Great Plains Labs http://www.greatplainslaboratory.com . We did the blood serum food allergy test that tests for 93 different foods. The test is done through the mail and you do need a doctor to sign for it.

We discovered gluten, casein, and soy intolerances with my children and I have all the signs as well. I think I actually have undiagnosed celiac disease.

I would recommend to her to also take some digestive enzymes along with every meal for a while. She should also add probiotics.

[texasmama]

Hi

It sounds like she could have Dermatitis Herpetiformis which is an intolerance/allergy/celiac thing to gluten.

Is she absolutely positive that she is gluten free. Did she buy new pots and pans, new toaster, new bakeware? Are her work surfaces free of gluten? Does she share the kitchen with a person who does use gluten? If so, does she have separate spreads such as butter, honey etc? Any cross contamination occurring will be have set off a DH reaction.

Another point is that a GF diet takes longer than a few weeks to fully work. My dd was GF for a year before I felt that finally, her body had healed. I was about 6 months. Dd was also cross contaminated just before Xmas and it has taken until now to completely recover.

If it is DH there is a drug called Dapasone she can take. It is very toxic and requires very close monitoring, regular bloods etc.

My feeling is that if it is DH, she has possibly been exposed to hidden gluten and has had a DH flare.

My favourite gluten website and forum is http://www.glutenfreeforum.com/ and http://www.celiac.com

There is truckloads of information on both those websites.

The best of luck for your friend. Let me know how she gets on.

Michele.

This exactly. I suspect that she is getting glutened without realizing it. If she eats Quaker Oats (cross contaminated with wheat) or drinks Rice Dream rice milk (labeled gluten free but containing a small amount which is enough to trigger damage in some people) or eating some of the Chex cereals which are labeled gluten free but cause reactions in some celiacs. Is she eating dairy? Dairy causes issues for many people while the villi are healing. It sounds like it took her a while to commit to the gluten free lifestyle so damage was continuing to be done. She is probably deficient on many nutrients. It will take time, but her best bet is to stick to a whole foods diet, read like crazy on celiac.com and make sure she is gluten (and dairy) free for a long period of time in order to heal. Also, it is very hard to eat out without risking cross contamination. We do it now, but for someone who is evidently so sensitive, she should probably avoid it. She also needs to check her personal care products like shampoos, deoderant, lotions, cosmetics, routine medications, vitamins...all of these can contain gluten. I didn't read all of the replies so I hope I am not repeating someone else. Good luck to your friend - it can be done.:001_smile: