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cdog7

Tests All Negative - This Does Not Help Me!

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First of all, there will probably be other who will chime in and say that they were celiac despite several negative tests.

Heres my perspective. My test results (in my siggy) were negative celiac, positive 'sensitivity test' and postive allergy test. I feel better when I dont eat gluten . . so I'm not going to eat gluten.

Apparently these new, more sensitive celiac tests basically ONLY test for villi damage. If your body hasnt destroyed your villi yet, then you arent sick enough to be considered celiac. If you keep eating gluten, some day you may be lucky enough to get sick enough to be actually dx'd with celiac. Sounds great, no?

If you want to take a test to show that your immune system reacts to gluten, you could take the A.L.C.A.T test i took, or the (oh, i forget, the popular one around here that does stool testing). However, a doctor cant MAKE you eat gluten. You dont HAVE to listen to him. Heck, there are plenty of dx'd celiacs who ignore their doctors and DO eat gluten. Doctors only know what they are taught, unless they really have a passion for understanding the human body and relieving human suffering . . . but for most, its just a paycheck.

Now, the one issue is . . . what do you say to people. You can still SAY you are a celiac . . . no one is going to call your doctor and check your references. You can say you are allergic, or intolerant, you can say it makes you feel bad, you can just say, I'm off gluten right now. Your choice.

But your health is more important than other people's opinions, even if they are doctors. Do what makes you feel better!


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 agree with everything Cara said. Your doctor can't FORCE you to eat wheat. If you don't want to eat it, don't eat it. I know it sounds like I'm stating the obvious... but, if a food makes you sick, regardless of what tests say... stay away from it.

May I offer a weird example here??

My daughter is allergic to peanuts. She had an anaphylactic reaction when she was really little. Initial allergy testing was glaringly positive. We've kept her 100% peanut/nut free over the years. Repeated blood tests come up negative. Skin testing is negative. However, she's failed an oral food challenge, miserably. She CAN NOT eat them. Yet, we have no positive results, other than by actually feeding them to her... which causes violent vomiting, hives, breathing issues... etc. (Her oral food challenge was administered in a controlled setting, with a full medical staff)

No one on this Earth will ever convince me that it's ok for her to eat a food that may well kill her, even though her "tests" are all negative.

If you feel better when you are not consuming gluten, despite what the lab work states, remove it from your diet. Only YOU can really make that determination. Sometimes, I swear... doctors are worthless.

FWIW - I am not a diagnosed Celiac. However, you can see in my sig.... my bloodwork was positive (according to a GI, but my allergist considered them negative), I have the genes for Celiac *and* gluten sensitivity, but my biopsy was normal, totally... 100% normal. The way I figure... my intestines are pretty darn long. They didn't get a biopsy from every inch of it! I've only had symptoms since my 3rd child was born, in August of 05. My biopsy was in Sept of 06. It's possible that he missed it. Totally possible. Totally possible they missed it with you.


Jayhawkmom -

Mom of three....

Jay - 11

Bean - 8

Ian - 3

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I can't claim an "official" diagnosis of celiac, either. I don't even have the celiac genes. But I have rock solid proof that I have an immune response to gluten: I eat gluten, I get sick.

So I call myself a celiac because that is best word to describe my body. It's not like anybody has ever asked for my membership card! :P

Please listen to yourself and your body and do what makes you healthy. The really good news about gluten intolerance is that you don't have to get a prescription or negotiate with an insurance company for expensive treatments. Our best and only treatment is in our own hands and that makes us lucky people compared to people with other chronic illnesses.

-Shannon

p.s. I really know the feeling of wanting validation of your concerns... Let us be that for you instead of the stupid doctor!


gluten-free May 17, 2007; casein-light since June 2007

Dx'ed gluten/casein intolerant by Enterolab. Family doc dx'ed "gluten sensitive" after dietary response. DQ 6 & DQ 7

8 year old daughter dx'ed gluten/casein intolerant & malabsorption by Enterolab and has been GFCL since June 12, 2007. Excellent response to diet, including growth! Tummyaches & irritability are gone! DQ 5 & DQ 6

Husband has DQ 5 (elementary, my dear Watson!). Self-diagnosed gluten-intolerant by diet response and challenge.

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If the goal is to eliminate your symptoms, then apparently the gluten free diet is helping. If you go gluten free and continue to have symptoms, you may need to consult a medical professional again.

How many biopsy samples did they take?

Also, there is a new study out that shows that the biopsy is unfortunately, not as accurate as we may like. http://www.reuters.com/article/pressReleas...2008+MW20080303

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Oh, you made me laugh so hard, which is what I needed today, I've had a lousy three weeks. Yes, some things will be changed to 'lame advertisement', because some companies have tried to spam our boards. That is why people put A.L.C.A.T, with dots between, to prevent that.

Anyway, I totally agree with everybody else. You know that gluten makes you terribly ill. Who cares what that ignorant GI doctor said. He wants you back on wheat? He is crazy, ignore him.

In order to get well, you need to be gluten-free. You know it, it is obvious. You will have to do what many of us do (me included). Go with what you know, and stick to the gluten-free diet. And I believe you have celiac disease, so there is no problem telling people that you have it.

I hope you feel better quickly.


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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If the goal is to eliminate your symptoms, then apparently the gluten free diet is helping. If you go gluten free and continue to have symptoms, you may need to consult a medical professional again.

How many biopsy samples did they take?

Also, there is a new study out that shows that the biopsy is unfortunately, not as accurate as we may like. http://www.reuters.com/article/pressReleas...2008+MW20080303

You know, I asked about that pill-cam thing, but they just told me that was a 'totally different test'!

I don't actually know how many samples they took, aside from 'several'. Maybe I should ask!

Thanks,

Carolyn

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You know, I asked about that pill-cam thing, but they just told me that was a 'totally different test'!

I don't actually know how many samples they took, aside from 'several'. Maybe I should ask!

Thanks,

Carolyn

And maybe you should ask for a complete copy of all your test results including the biopsy and endo report. Many doctors do not recognize the different stages of celiac and your biopsy report may reveal that although you still have villi you are being impacted.

I agree completely that you do not need anyones permission to be gluten free. Your return to health will be proof enough.


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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And maybe you should ask for a complete copy of all your test results including the biopsy and endo report. Many doctors do not recognize the different stages of celiac and your biopsy report may reveal that although you still have villi you are being impacted.

I agree completely that you do not need anyones permission to be gluten free. Your return to health will be proof enough.

That's a great suggestion. I also talked to my Mom today, who was there with me after the endoscopy (and was more coherent than I at the time) - she said the doctor mentioned seeing a lot of inflammation in my intestine. So there 'tis, something's going on in there!

thanks!

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That's a great suggestion. I also talked to my Mom today, who was there with me after the endoscopy (and was more coherent than I at the time) - she said the doctor mentioned seeing a lot of inflammation in my intestine. So there 'tis, something's going on in there!

thanks!

It wouldn't surprise me at all if when you went to the followup appointment your doctor tells you to keep on gluten and come back in a year and see if those villi are gone yet. Many doctors do not want to diagnose us till we are in the end stages of the disease (total villi destruction). If the diet is helping that is diagnostic.


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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It wouldn't surprise me at all if when you went to the followup appointment your doctor tells you to keep on gluten and come back in a year and see if those villi are gone yet. Many doctors do not want to diagnose us till we are in the end stages of the disease (total villi destruction). If the diet is helping that is diagnostic.

And you know, if he does suggest that I'll refuse - I think that's totally barbaric. Hopefully in time, most doctors will look back on stuff like this and agree!

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I too have been tested ...blood/endoscope...both negative.But my doctor feels much different and ORDERS me to continue the diet as I may be in a very early stage of celiac disease because I have so many symptoms.He even advised me to have siblings tested for good measure.A few days ago,I was confused and felt so uninformed after the nurse called with the results.After spending hours ready everything I can find....I feel like maybe I got lucky and found an celiac disease educated doc with the insight to see beyond the tests.I'm not 100% yet...it's been only 6 days....but I'm giving it my best shot.This support group has been so helpful.Hang in there and go with your "gut" (pun intended) instinct.

Kay


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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I also don't have an official diagnosis. But I pretty sure I was well on my way to a "gold standard" celiac diagnosis. I had that "just inflammation" line too. Why don't these doctors care about what causes the inflammation?

I know that feeling of wanting an "official" diagnosis. I was lucky enough to test positive to a wheat allergy, which has helped tremendously with my family accepting my diet. But with your mother being celiac, I'm sure your family would be very supportive. I would suggest reading the book "The Gluten Connection" It is a very compelling book that explains why all people, not just celiacs should avoid gluten grains. It will make you feel more confident in your decision.


Celiac blood testing negative July 2007

Confirmed diagnosis of wheat allergy by skin test Dec 2007

Gluten-lite since July 2007 (didn't know all the hidden sources of gluten)

Gluten-free since December 2007

Life Long Symptoms

Extreme fatigue--needing 10-12 hours of sleep and still woke up exhusted

Allergic to everything--allergies remained out of control despite shots and strict enviornmental controls in my home.

Severe "sinus" headaches

More Recent Symptoms

IBS symptoms

Severe stabbing stomach pains that started 6 months before diagnosis of wheat allergy.

In my heart I feel it is more than an allergy and that I am gluten intolerant. This is based on my how eerily my childhood maladies match most celiac's histories, and my more recent increase in the severity of my usual symptoms and new digestive symptoms that have already started to subside on the gluten-free diet.

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