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ironspider33

Results In: Non Celiac

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so my results from blood work came back. the number he threw at me was 3 (dunno the measuring or whatever, but apparently really low, 9 would be high). So, I am definitely gluten sensitive and intolerant because my blood pressure skyrockets, i almsot pass out, and spend the day on the crapper when im glutened.

So iam viewing this as a plus. THat while i don't have a firm proven test to show celiac, I am kinda relieved there hasnt been any damage. I felt great several days aftr going gluten free amonth ago, and the weight has been coming off steadily cause I can run well now. I also am scared to even try milk for fear of its effects. so i avoid dairy and stick to goat stuff.

ANyone else non celiac but gluten causes them the crazy symptoms? I listed my symptoms to him, and how they cleared up, and he said (almost like i was a kid) there were pyschological benegits that could cause me to 'perk' up .

ummm. pardon? did you not hear that all my symptioms went a way for a month? sorry, there's no way it's in my head. Whatever my body's reaction is to gluten, it isnt in my head. the fact i've lost 10 lbs running LESS is not pure dietary less fat . cause i have eaten low fat since i can remember without dropping a pound (including 10 hours a week for two months this year to try and train for an ironman)

sigh. anyway, he agreed that the gluten free diet was the way to go.

anyone else int eh sae boat? I'll never knowingly ingest gluten again, but i was wondering if anyone else is non celiac, et still displayed the same symptoms ...neurological in nature, depression etc.

My thinking is that the severity may not be autoimmune , but the symptoms are still severe enought o be dibilitating?

me

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You could still be celiac even with the negative blood tests. Thankfully you knew enough to give the diet a good shot. I am one of the 20% of celiacs who show negative on blood work but no doctor even told me to try the diet. I had lots of autoimmune impact and was a 'classic' case symptom wise but doctors would look at the blood test results and tell me to be happy I didn't have it 'cause I wouldn't be able to eat anything'. Then they never even bothered to tell me what it was that I shouldn't be eating. Many doctors now would likely define me as 'gluten intolerant' but with severe DH I am clearly celiac. Stick with the diet and heal and don't worry about the difference between the two, if there is one. My primary symptoms for many, many years were DH and neuro symptoms before the daily and nightly D hit hard and heavy. I hope you heal quickly and do continue to be strict with the diet and hopefully other autoimmune issues will not appear.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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You could still be celiac even with the negative blood tests. Thankfully you knew enough to give the diet a good shot. I am one of the 20% of celiacs who show negative on blood work but no doctor even told me to try the diet. I had lots of autoimmune impact and was a 'classic' case symptom wise but doctors would look at the blood test results and tell me to be happy I didn't have it 'cause I wouldn't be able to eat anything'. Then they never even bothered to tell me what it was that I shouldn't be eating. Many doctors now would likely define me as 'gluten intolerant' but with severe DH I am clearly celiac. Stick with the diet and heal and don't worry about the difference between the two, if there is one. My primary symptoms for many, many years were DH and neuro symptoms before the daily and nightly D hit hard and heavy. I hope you heal quickly and do continue to be strict with the diet and hopefully other autoimmune issues will not appear.

Wow..I did not know you could still have Celiac and have negative blood work...I am still waiting on my blood work, I should hear next week sometime, thanks for the post!


Constipation, Gas, Bloating, Abdominal Pain, Ataxia, Brain Fog, Joint Pain Headaches

Bloodwork Negative

Went gluten free 10/02/09

Immediate and Positive intestinal improvement with improvement in headache frequency

Enterolab results 11/23/09 (after one month gluten free)

Fecal Anti-tissue Transglutaminase IgA 10 units

Fecal Anti-gliadin IgA 9 units

Fecal Fat 1267 units

HLA-DQB1 Allele 1: 0201

HLA-DQB1 Allele 2: 0202

Serologic equivalent: HLA-DQ 2,2 (Subtype 2,2)

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You definitely need to be on a gluten free diet, diagnosed or no. Even if you are not celiac (and there is much controversy about the testing methods and criteria) you are obviously gluten intolerant and should avoid it. Some people even believe that gluten intolerants have just not yet developed full-blown celiac disease. And there has been a lot of discussion on this forum about what the differences are between celiac and gluten intolerance. Since I am self-diagnosed and would never again eat gluten to be tested, I can't weigh in too heavily on this issue; and I am happy living in the ignorance of not knowing which I have. I also have multiple other food intolerances and other autoimmune problems. But there really is not a lot of difference between the two conditions, and they call for the same restrictions.

I just came back from a gluten free expo where Dr. Rodney Ford (a world-recognized authority on the subject) spoke, and his current estimate here in New Zealand is that one in 40 people is a celiac, and one in 10 is gluten intolerant--that is 10% of the population :o . That probably accounts for the wide range of exhibitors at the expo and the quality of the foods on offer. I only wish I could have tried more of them but am so limited because of my other restrictions. :(

Anyway, negative or positive, it sounds like gluten free is the way for you to go. All you have to gain is your good health. Good luck.


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

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wow! I had a similar experience... celiac test came negative but I didnt give the diet a try till several months later. My doctor had told me I could try the diet a while ago to see what happens but I was sloppy and didnt experience the relief I got until I made a real effort to be strictly gluten free. I know that a true diagnosis of Celiac would require me to eat gluten again to be re-tested, but I am not so sure I want to do that yet.

Im glad that you have found what helps you. I know that I dont plan on returning to a normal diet because I just feel way better gut-wise since cutting out gluten products. I am feeling good, and I take note of it and enjoy it, reminding myself of the reason why I feel good. That seems to help me stay on the diet.

Best of luck!

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Yes, I am having a similar issue. I was researching IBS (which was about the 50th thing that I was diagnosed with since symptoms appeared as a child) and I read that a gluten free diet helps with symptoms. I tried the gluten-free diet just to relieve my IBS symptoms and I experienced so many other wonderful things. No more muscle aches, backaches, nausea is gone, no more headaches, no more IBS symptms AT ALL. My husband (who is a nurse) told me to get tested for celiac since it was such a restricted diet. He said I may as well be sure. Anyway, I resumed eating gluten for about a week, was sick as ever, and the test came back negative. I immediately went back to gluten free on my own. I have been gluten-free for 9 weeks now and feel great!

I was wondering if my test was negative because I hadn't eaten enough gluten. But I don't want to eat enough gluten just to get another test done. No thanks! But when I say I am just gluten intolerant people act like I'm just a high maintenance eater. In fact, my husband makes me tell them that I am Celiac when we go out somewhere. I guess that's better than getting glutened again!

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I had a blood test and biopsy for celiac disease and both came back negative. Anyway, I tried the gluten free diet and felt so much better 2 days into it. I didn't feel 100% better though. I drank a large glass of milk and think I may also be lactose intolerant as I suffered breathlessness, dizziness, cramps and diarrhea after drinking it. Today the doctor gave me a blood test for cows milk allergy and I had to give a stool sample for lactose intolerance testing. My results should be back soon. Lactose intolerance seems to be something that celiacs also seem to have before they heal. Who knows, maybe the testing for celiac isn't accurate at all, or maybe my intolerances are just a coincidence. Who knows? :huh:

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