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Disapointed...


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8 replies to this topic

#1 Bigbread

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Posted 26 November 2010 - 04:56 PM

Damn, Iím so disappointed. I got my results and all is negative. No trace of problems with gluten or the genes. I gave my GP the form of what tests to do as he did not know anything about celiac. I read a lot on this site that people get false negatives and even my GP said the problem with these test are you can still have a problem with gluten and the test just doesnít pick it up.

I really really really wanted a diagnoses. I want to know what is wrong. I am so tired and sick of being sick itís really influencing the quality of my life. I am going to cut out gluten but Iím always going to be afraid Iím missing something. Itís not an easy plan to follow and a diagnosis would have made it worth while. A diagnosis will be like a breath of fresh air.

I thought of gluten because after I eat oats my stomach swell up in seconds so badly for the rest of the day, I want to get a knitting needle and make whole in my stomach so it will go down. I donít of course.

The itching and burning is drives me crazy. At the same time I get painful pins and needles in my face, neck, back and arms. And red patches on my face that scars badly. The reacutane is stopping the rest of my brake outs but not the scarring. Iím now starting to get it on my legs and stomach. The bad part is Iím starting to get use to it, like I will miss it when itís gone. Hat how long this has been going on.

The thing that got me convinced to get tested was the brain fog. I know other people donít get it but I thought it was part of my personality. At the worst times my vision looks like a scene from Days of our lives when they play some ones dream. The edges are white and foggy or at the worst times it seems like the whole screen I look through is white and foggy. Some people here explained it well. Some one said it use to be like I could be entertained watching paint dry.

Iíve been to so many doctors. Spend so much money. After every medication I feel worse. The best doctor was a therapist who told me not to stop looking for solutions no matter how tired I am, I saw her after a braniac doctor told me ĎIím just one of those patients who has to have something wrong with her even when nothing is wrongí. This while Iím sitting there with a face thatís as white and thin as paper with blistery growths on my face. And my vomiting symptoms every day are all in the mind as an excuse not to exercise. Iím just week minded. Can I ask for my money back? Iíve cut out gluten in the past however I was told I can eat rye and oats, and hence did not feel better. This time I will cut out the whole lot plus lactose.

Thatís enough complaining. I will cut it out and see what happens.
And start to keep a journal, writing everything down, make up, food, clothing detergent.
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#2 mushroom

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Posted 26 November 2010 - 05:32 PM

I am sorry you didn't get the definitive answer you wanted :( So many of us don't. But hey, if the gluten free diet makes you recover, then isn't that an answer in itself?? :) And whoever told you you could eat rye ought to be shot because the gluten in rye is the same as the gluten in wheat, as is the gluten in barley. Some celiacs tolerate certified gluten free oats; some do not.

If you have itching and burning and red patches that scar when they heal, that really does sound suspiciously like dermatitis herpetiformis, which is the skin form of celiac disease. People with DH will often test negative on the blood tests. The way to test for dermatitis herpetiformis is to find a dermatologist who is familiar with it, and who will take a biopsy adjacent to (not ON) the lesion, because the antibodies will be found in the adjacent tissue. A diagnosis of DH is a diagnosis of celiac. What have your doctors said about these red patches that scar? Do they have little blisters in them? Has anyone given you a diagnosis of what they are? Maybe that should be explored - it could give you your definitive answer.
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

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Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

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#3 Dixiebell

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Posted 26 November 2010 - 05:38 PM

Hi Bigbread. Have you been to a derm. for a biopsy of that rash? Sounds like you could possibly have DH. If you have DH then you have celiac. If you can get a biopsy, they need to do it beside the break out not the break out itself.
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Started on this journey w/ my 9 yr old son after a bout w/ the flu in the fall of 2009.
2 neg celiac blood tests, mine was also neg. No endo done. Son had x-ray, showing severe constipation. Son has latex allergy. KP for both of us.
Long family history of bowel problems, auto-immune and all sorts of cancers. My G-mother informed me that she was put on a gluten free diet after she had my mom (1950's), of course she stopped when she felt better. She has had problems ever since I can remember.
So here we are! I do have my son's Dr to thank for even bringing up celiac! Thank You Dr.B!
My adult daughter also has been helped by eating gluten-free.

#4 Bigbread

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Posted 26 November 2010 - 05:51 PM

Thanks for the posts.

My skin has been diagnosed with acne. It doesn't matter what my skin looks like Dermatologists(are the worst- been to 6) say all forms of skin problems are acne and food does not cause skin problems. Expect Exzema should not drink milk. They even refuse tests and wont' listen to other symptoms. Even when I got a bad reaction to homeopathic meds that caused my skin to scar I was told its acne. I honestly dont think they know what to do if the 3 acne meds dont work. Which I can tell you it doesn't on me.

The worst part is honelty the part where they dismiss me as if I'm a todler then I know they have no idea what they are looking at. I've been to 25 docters in total. So I am really tired. If this doesnt work I don't know what will.
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#5 mushroom

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Posted 26 November 2010 - 06:08 PM

I know what you mean about dermatologists, they suck - I won't go back to mine; I hate that woman! She told me not to stop a medication I was taking for my RA even though it was making my psoriasis so much worse. Ha, what did she care? It was no skin off her nose, only mine :blink: :lol:

Seriously, though, will no one take you seriously? Do you have someone who could go to the appointment with you and be an advocate for you, and not allow the doctor to be so dismissive? It is so ridiculous so say that food does not cause skin problems; almost all my skin problems (except the cancers :o ) have been caused by food. What a bunch of bunk. I think doctors become dermatologists because they aren't bright enough to be anything else :rolleyes: Okay, end of dermatologist rant.
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

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

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#6 Skylark

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Posted 26 November 2010 - 07:16 PM

If you go off gluten and all your problems go away, that will have to be a "diagnosis". Actually what you describe could be more allergic than celiac and the definitive test for allergies is elimination and challenge. Try the diet and see what happens. good luck!
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#7 cassP

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Posted 26 November 2010 - 07:26 PM

i had Excema on my foot for 5 years- it itched so bad i would scratch till it bled.. it was horrific. it went away when i took wheat out of my diet a decade ago... not milk.

your diet can most definitely affect your skin. i hope you find the answers you want and feel better :)
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1986- Elevated Speckled ANA/no Lupus.negative Sjorgens
2008- AntiGliadin IGA/IGg~ Negative,TTG IGA/IGg~ Weak Positive, Endomysial Antibody~ Positive, IGA Deficient.
no biopsy (insurance denied)
6/2010- Enterolab Gene Test:
HLA-DQB1 Allele 1 0302
HLA-DQB1 Allele 2 0302
HLADQ 3,3 (subtype 8,8)
7/2010- 100% Gluten Free
8/2010- DH
10/2010-Hypothyroid dx-> 12/2010 Hashimoto's dx + 1/11- Graves dx :(

#8 tarni

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Posted 26 November 2010 - 08:35 PM

Hi Bigbread, yes Damn indeed! Iím a bit of a newbie too. My first post was two months ago and similar to yours. I spent lots of money, and craved, finally! answers and a definition to prove I was not crazy/lazy/hopeless. The medical profession let me down. But like you I jumped on this forum and got informed and caring advice.

My blood tests were positive, my genes also, my symptoms many and severe and consistent with celiac, but the endoscopy/biopsy said Ďnoí. So they closed the medical door, telling me that Ďmental illness often manifests in physical symptomsí. Oh and the next week phoned to say Ďby the way you are severely Lactose Intolerantí.

Unlike you I do not have dermo problems, except for one whole year after a miscarriage in my early twenties I did have this strange acne (like an under-skin disease) on my face (when I had bypassed that horror in my teens). So best to listen to those here who are more informed in that area.

The really funny thing I read on this Forum and I always keep in my oft-times foggy-head:

If it looks like a duck, and walks like a duck, and quacks like a duckÖ then it is a duck.
(duck = intolerances/celiac).

So, I went 100% gluten free two months ago. Felt better. Got accidentally cross-contaminated last week and spent the next few days confined to bed and with fatigue, tight calf muscles, sore neck and shoulders, and really sore mouth lips (a new symptom). So if I had any ĎGluten Intolerance doubts/denialí they are gone. 100% careful now.

All the best, t
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Nov 2010: Fructose Malabsorption - low FODMAP diet
Oct 2010: Lactose Intolerance
Sept 2010: Gluten Intolerance

Symptoms: gastrointestinal, neurological, psychological, hormonal

Father: Dermatomyositis (autoimmune disease)
Sister: Non-verbal Autism
Cousins: Gluten Intolerance, Crohns, Hiatus Hernia

#9 Monklady123

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Posted 27 November 2010 - 04:15 AM

Yep, just go gluten-free and if you feel better then that's your "diagnosis". I've opted not to have the endoscopy because I don't want to go through several months of eating gluten every day. For me it's simple -- if I eat gluten I feel awful, if I don't then I feel good.
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