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Old 04-01-2008, 10:33 PM   #1
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Blythe54 HB User
Celiac suspected/ dermatitis herpetiformis likely?

(I'm New) Intolerable skin itching since Nov, dismissed by doctors initially--then was finally treated without real diagnosis in Jan. w/ antihistamines and betamethasone ointment. This helped supress itch and rash, but eventually it reccurs, then I must take more. Months of nightmarish scratching & no sleep. Damaged skin w/ so much scratching. Also "sweats" come and go. Itching often worsens at night and improves a bit in day. Additionally,suffer unreal constipation despite massive amt laxatives. for this and itching I Sought diagnosis' in 5 separate(self pay)visits to Dr's- (indluding a dermatologist).routine bloodwork in November resulted "serum deficiency B-12 and Folic Acid", & "large red cells"(?)reccomendation:"supplemental B-12 and Folic Acid"
No one suggested Celiac. Very recently I am ready to try anything- so I went to an accupuncturist- it was his wife who insists 'celiac' is cause. Then I made a new appointment w/ medical doctor last Wed to present this idea
A Blood test was ordered/done last Wed, not sure which test-and no report yet of result. Dr. gave me referral to a G.I. --but the appt is not until 4/24. Long wait w/ itch of this kind, and constipation to point of toxification.
[Today- online- after so much searching- found page w/ precise rash description.]
Understand from this,one can have Celiac and not dermatitis, and have dermatitis herpetiformis without Celiac, and may also have both.
Though I have addtional significant health problems, this seems specific to symptoms above. It's not been diagnosed yet, why no one thought of it? Feedback?

 
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Old 04-02-2008, 12:51 AM   #2
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rheanna HB Userrheanna HB User
Re: Celiac suspected/ dermatitis herpetiformis likely?

Blythe54,

No one thinks of it because celiac is still looked on as a rare disease. I have had doctors tell me that I couldn't possibly have celiac disease, because I would be having diahrrea several times a day. This is a severe form of the condition. It is also possible to be gluten sensitive, with the symptoms showing up as other than diahrrea. It is also possible that your antibody tests might come back negative, but you might still be sensitive to gluten.

I looked closely at my diet, and narrowed down gluten as a definite trigger of my symptoms (primarily painful acid indigestion, but other symptoms as well). My tests came back negative, which in the eyes of doctors, means that I don't have celiac. Therefore I am being silly for excluding gluten from my diet. Doctors tend to believe only what their tests tell them. Tests are wonderful things, but there are also other ways to tell if you are gluten intolerant or gluten sensitive.

Try a diet without gluten for a month and see if your symptoms get better. Then intoroduce gluten back into your diet and see if the symptoms return.

Dermatitis herpetiformis is often associated with celiac. I dont have this, but I read about it everytime I read about celiac.

I hope that you find out what is causing this. But as I said, even if the tests come back negative, you can still try a gluten-free diet to see if it helps.

--Rheanna

 
Old 04-06-2008, 04:51 PM   #3
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zoe111 HB User
Re: Celiac suspected/ dermatitis herpetiformis likely?

Quote:
Originally Posted by Blythe54 View Post
(I'm New) Intolerable skin itching since Nov, dismissed by doctors initially--then was finally treated without real diagnosis in Jan. w/ antihistamines and betamethasone ointment. This helped supress itch and rash, but eventually it reccurs, then I must take more. Months of nightmarish scratching & no sleep. Damaged skin w/ so much scratching. Also "sweats" come and go. Itching often worsens at night and improves a bit in day. Additionally,suffer unreal constipation despite massive amt laxatives. for this and itching I Sought diagnosis' in 5 separate(self pay)visits to Dr's- (indluding a dermatologist).routine bloodwork in November resulted "serum deficiency B-12 and Folic Acid", & "large red cells"(?)reccomendation:"supplemental B-12 and Folic Acid"
No one suggested Celiac. Very recently I am ready to try anything- so I went to an accupuncturist- it was his wife who insists 'celiac' is cause. Then I made a new appointment w/ medical doctor last Wed to present this idea
A Blood test was ordered/done last Wed, not sure which test-and no report yet of result. Dr. gave me referral to a G.I. --but the appt is not until 4/24. Long wait w/ itch of this kind, and constipation to point of toxification.
[Today- online- after so much searching- found page w/ precise rash description.]
Understand from this,one can have Celiac and not dermatitis, and have dermatitis herpetiformis without Celiac, and may also have both.
Though I have addtional significant health problems, this seems specific to symptoms above. It's not been diagnosed yet, why no one thought of it? Feedback?

 
Old 04-06-2008, 05:09 PM   #4
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zoe111 HB User
Re: Celiac suspected/ dermatitis herpetiformis likely?

i have been ill for three years i dont think coeliacs is my only problem though. hoever just so you know im deficient in iron b12 folate for three years must have been teststed a dozen time for coeliacs. then i got bad tummy trouble for a year and losts and still loosing loads of weight. i had erosions in my stomach doedenal. also my coelia blood test cam e back positive it must have been tested loads in three years and now positive. just wanted you guys to know medical testing not always a friendly foe i still have to wait for stomach biopsy though. no improvemnet in my health yet at all. hope this helps maybe considering your choices before waiting for tets to turn positive. zoe

 
Old 04-07-2008, 02:09 PM   #5
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Blythe54 HB User
Re: Celiac suspected/ dermatitis herpetiformis likely?

Thanks so much for reply. I am aware of false negatives from the literature.
I am actually encouraged to learn that your tests changed from negative to positive. I wonder why this should be, as you seemed to have to suffer a long timeand then got so much worse before you got this result. I don't wish to go through this, for sure.
My sister has this very same rash, and tells me now, she's suffered with it for 8 years. When I see the photos on one website, I'm amazed at the similarity. She has medical insurance, which I don't now (I own my own business) She has had thyroid surgery for a parathyroid tumor in the past (auto immune cause??) She listned to what I thought, and had a celiac blood test (again, don't know specific test) and she has a report back, tellng her it's negative. It's hard for both of us to keep persuing when dr.'s don't appear to be on the sae page. I applaud those of you who don't listen to bad advice, and persist. We have an unhealthy need not to be thought of as "hypochondriacs". Well, when you're sick, you're sick. One doctor even told her "this is self inflicted" years ago, and she still suffers terribly w/ the rash. The mere fact alone that both of us have this, unbeknownst to the other, indicates genetic cause of some kind. She has misguided religious doctrine she suffers under as well, which presses on her mind that if it is well w/ her faith, she shouldn't have any stress related problems. So she suffers in silence. Now betamethasone no longer works for her. I started to say, she will see her endocrinologist today, and bring some of this up to him. She shudders in advance her will roll his eyes. Later this month she will see a dermotologist as well. I wish her good luck. I'm hoping that if she were to get a comformation related to this, It could make my pursuit easier. I still haven't got test results from 2 weeks ago--inefficient health system, to say the least. Poor Lizzie, but she is covered for her dr visits.
I have completely cut out gluten everywhere. Are a few over the counter laxatives which don't say. I was frozen sunday when I realized I would have to refuse communion if I didn't want to eat an inch square piece of bread. Oh, dear. The dear Rev, a good friend, will certainly suggest a way, but again, I feel stupid about translating the concept of Celiac, in relating that even minute amounts are problematic. Really stupid. I think some folks just don't do the bread/wafer/whatever, but we do communion by intinction, (dipping bread in cup before eating, and I would have to grab the chalice and take a sip--don't know how that would go over in other's eyes. (trying to be light, here).
I have to watch all of it, though. My husband made wonderful brown rice and tofu stir fry, and I ate a huge plate and was ready for a second, then thought to ask about the soy sauce. It was an organic Teriyaki sauce, second ingredient was wheat. It was all over it. Goes to show how hypervigilent one must be to avoid gluten. Geez.
I

 
Old 04-07-2008, 07:00 PM   #6
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Wallis86 HB User
Re: Celiac suspected/ dermatitis herpetiformis likely?

Hi Blythe,
I have a good friend who is celiac, but far far FAR more sensitive than most to gluten. He actually projectile vomits if he uses dental floss made with gluten, or if there is ANY contamination of his food. In fact, he only eats out at 2 restaurants that know him and celiac well. Well, my point is, I want to tell you about the "hidden" sources of gluten, including the obvious contamination of the communion chalice... if people are dipping their wafer in there, there will be gluten in the wine which will still cause possible damage to your intestine. So the foods you should avoid:
Wheat
Rye
Oats (they are processed on equipment that is contaminated)
Barley
Malt
Anything that contains modified food starch (modified corn starch is ok)
Glide dental floss
Vitamin Water

Read EVERY single ingredient list, EVERY time. Something that claims to be wheat free is NOT necessarily gluten free.

Hope this list helps with your gluten free lifestyle!
Wallis86

 
Old 04-08-2008, 06:46 AM   #7
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rheanna HB Userrheanna HB User
Re: Celiac suspected/ dermatitis herpetiformis likely?

Blythe54,

Wallis86 is correct -- if people are dipping their wafers into the wine, it is contaminated with gluten. Please check with your pastor to see if there is another way for you to participate in the service. I have heard of accommodations for people who are alcoholics, who have to find some other way to participate than sipping wine -- perhaps grape juice? In your case, the main thing is to avoid contamination. Perhaps you can offer a gluten-free wafer for blessing beforehand, or a separate vial of wine/grape juice. Then your supply is separate from everyone else's. Another option is to ask if the pastor can put a little wine on your forehead or something as a symbolic participation.

Tamari is made without wheat (only soy) and tastes just like soy sauce.

One of the themes in this discussion is whether one is actually officially diagnosed as having an official celiac disease or gluten sensitivity via the "official" tests. If you try to eliminate gluten from your diet now, allowing time for your intestines to heal and the antibodies to be cleared from your body, then no test will find evidence of celiac. This is what happened to me. It took so long to find a doctor who was willing to test, that, if there had ever been any evidence there to begin with, it was certainly not there after I tried to live for several months without gluten.

You will have to decide for yourself if it's worth it to be scrupulous in removing all traces of gluten from your diet. If you wait for the tests, then you might or might not have a positive result. If the tests are positive, then you know for sure that you need to change your diet. If the tests are negative, then you still may or may not be gluten sensitive, as zoe111 has found.

I'm rambling. What I'm trying to say is, it's possible to go on the diet (and read the fine print on everything as Wallis86 says), and see if your symptoms get better. All the tests will do is give you an "official" label. You'll still have to change your diet.

--Rheanna

 
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