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starrymazed

New- Disappointed Don't Know Where To Go From Here

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Sorry this is so long, but I really could use advice.

Ever since I was a young child, I have been plagued by frequent headaches, as well as severe dry skin, including Keratosis Pilaris. I have never found a good explanation for this. I am a pretty healthy 27 year old female, and I have always been pretty skinny, borderline underweight (5

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I haven't been diagnosed yet and im sure someone on here can answer your questions better but I think you can have celiac disease or at least a gluten intolerance with negative blood and biopsy... I'm sure someone can either say I'm wrong or confirm what i"ve said soon enough :)

if you are seeing such an improvement then I would stick to the gluten-free diet and you could suggest for your other family members to try it also.

did you get tested before or after the gluten free diet??

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The celiac disease tests aren't all that reliable, so it is possible that you had false negatives.

But it may be non-celiac gluten intolerance, which can be just as bad as celiac disease, but won't show up on those tests. In either case, the gluten-free diet is the only cure for the problems.

You have had some amazing results on the gluten-free diet in such a short time, so it is VERY obvious that you have a huge problem with gluten.

It sounds like your skin rashes were misdiagnosed and may have been dermatitis herpetiformis instead.

If you want/need to have official confirmation, you could do the tests with Enterolab. They test for gluten intolerance (they can't diagnose with celiac disease, as unfortunately, celiac disease is still officially affiliated with villi damage only). And you can be on a gluten-free diet to do their testing, as it is still accurate up to a year after starting the diet.

But if you are happy to just feel better, knowing what is causing your problems, testing won't be needed.

You could have your family tested with Enterolab as well.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

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Thanks for the responses. I have not had a biopsy done, though I am sure the GI doc won't do it with a "normal" blood test. As far as the lab goes, I have already read up about it, but, as much as I would love to do that, I cannot afford it.

The main reasons I am disappointed are because I can notice so much difference! I can eat a meal and not feel like I am going to throw up or feel bloated beyond belief. My 7 year old daughter has a lot of similar issues, as well. She is TINY (but the docs say "well look at you"), always on the low end of the charts, with the exception of when she was born-she was over eight pounds! Anyway, she has complained of stomach aches for years now, has itchy body rases frequently, frequent nose bleeds, complains of legs hurting or tingling, and has such mood swings that the doctors are thinking it might be eary onset bipolar disorder. We both stated omega 3 supplements, and I have seen slight improvements, but she still is very gasy and probably complains of stomach aches at least 3 times a week.

What I am worried about, and why I want a diagnosis of something, is that I am bipolar, and, because of that, my husband, mother, and other family members don't always take me seriously or think I am over reacting. Now, granted, they are aware of the improvements I have had going gluten free, and mother has even reduced her wheat intake and says she is feeling a little better herself. But, if I tell them that the results were negative, they will not take me seriously. I am just frustrated since I have see too many changes. I was gluten free for a few days only before the blood test, by the way.

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Wow, that is really frustrating! However, it sure doesnt SOUND like its all in your head. You are an adult and you can certainly keep yourself on a gluten-free diet without anyone's permission. Heck, even if it WAS all in your head, so what . .. if it makes you happy, why should they object?

However, your daughter is a different thing - they might feel they have the right to trump your decision since you have a dx'd mental disorder. You might have to approach a little more carefully. For example, you could say, look, even tho I didnt get dx'd with anything, I feel a LOT better off of gluten. I would really like to give (child) a trial off of gluten, too, maybe for a month. But I want you guys to help monitor her, before and after, to see if its really making a difference. Maybe daddy and/or gramma could help you document how many rashes, nose-bleeds, leg pains and tummy aches she has for 2 weeks, then take her gluten-free for a month and document the same things. Maybe if they help you get the improvements on paper, they will believe it.

The problem is, many doctors dont really believe in such a thing as being gluten-intolerant unless you test positive for celiac. In fact, many doctors barely believe in celiac, saying things like, oh, thats rare, you dont have that, or, oh, you wouldnt want to have that, when people ask for the tests. So even if you document it this clearly, your doctor is quite likely to say its all a coincidence. They have been taugh that 1 case study is, by definition, a coincidence.

I know its hard esp when your family has limited confidence in you right now, but you need to do everything you can to help your daughter - you need to risk being told your wrong but do everyhting you can to prove yourself right.

Oh, and, btw .. .i've seen people report on this site that their bipolar symptoms went away when they went off gluten. My depression and anxiety lifted about 2 months off gluten. I'm about to order the a.l.c.a.t test for my son, because i need SOME sort of confirmation, but i'm hoping to help him too - he feels too sick to go to school every morning, and he's on an anti-depressant and 2 anti-psychotics, dx'd mild aspergers and bipolar when he was talking about suicide at age 9.


Cara - 42, mom to dd 15, ds 12, ds 4

Off gluten and dairy (and tapioca ;-( ) since 11/07

A.L.C.A.T. test showed over 50 sensitive foods

Celiac panel came back negative.

Regular allergy testing reacted to every inhalant and all but 6 foods.

Slowly adding in foods, started w 19 and now have 25

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I tested negative on a blood test and the biopsy.Never the less,my doctor insisted I had all the symptoms and must start the diet that day.I was confused until he explained that he thinks he caught this intolorance/celiac disease very early.I am in week 3 of this lifestyle and I am definately feeling better....although my symptoms were many ...there were mild to moderate.I can't say that I suffered like many people I've read about....but I was miserable enough to seek out a doctor.I am feeling much better now and can only hope I continue to feel better every day physically and mentally.

.My family too,has had their doubts and questioned the confirmation thinking I just took this one doctor's word and changed my whole life.I told him I would give it 3 months...that's all he asked for afterall....saying that I would know myself if the diet worked or didn't by then. What's the worst that could happen I asked them...maybe become a little healthier?They see now that it really doesn't matter what's written on some paper somewhere...the change has been positive and the old me is back and there's no disputing that.I can only tell you my experience as I pretty new to this group. I learn something new everyday here.Hats off to everyone here sharing info and tips....it's a wonderful place.


Kay

Gluten free since 4/11/08

Positive dietary response

Blood test negative

Endoscopy negative biopsy

but found :" Villous blunting and atrophy" and

"Gastric mucosal abnormality characterized by erythema"

Doctor insisted I need to go gluten free for at least 4 months

Best thing I ever did!

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Well, I just wanted to add that I ended up in a hurry yesturday morning, and had a little bit of a blueberry muffin. Well, I realized a few hours later that I had developed two canker sores in my mouth, was bloated, and the little red bumps I get on my inner forearm (opposite elbows-in the folds of my arm), as well as the red bumps on my thigh, had come back slightly. That is really all I need at this point. My husband is even considering the diet, as he has quite a few symptoms. He also has non stop sinus infections and ear issues, so we thought it would be worth a shot to see how he responds. The response in me over a little less than two weeks gluten free has been so amazing!

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Hi Starry, I am so happy for you that you are getting better on the gluten-free diet.

& wow, how wonderful that your hubby is thinking of trying it also. I had a lot of those sinus, ear infections... for me it is also dairy along with the gluten, so he might have to give up dairy also. Now, once he is all healed - maybe a year, he may be able to add some forms of dairy back in his diet. I can have butter but no cheese :( well occasionally I will cheat on cheese but not very often - it gives me an earache & the runny nose...

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