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Confused. Sceptical About Diagnosis.


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10 replies to this topic

#1 AliSko

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Posted 05 April 2011 - 08:35 AM

My Dr. told me I have Celiac Disease based on the 'positive blood test'.
Only recently I realized that the blood test is not definitive. Is it? When I was tested, it was Christmastime and my gluten consumption was probably 300% more than it ever would be in another month because I went kind of crazy with food and booze (I normally eat extremely low carb for other reasons). So maybe my blood test was abnormally high.

I have been gluten free (strict) since January 15. I don't feel any better. But here is the thing, I never felt bad in the first place and did not have any of the symptoms listed for celiac (except I had 2 miscarriages in the past).

So how the heck do I know if I am Celiac or not? I'm not willing to get sedated and do the biopsy as I am 4.5 months pregnant right now and do not need added stress.

After I have the baby and stay Gluten free will my body and skin and energy become magically awesome? Because I feel like its pretty good now (and was before pregnancy too).

I just feel so frustrated by this gluten free life. Maybe I am in denial but I'm starting to question my Dr. as well.

Any insight would be appreciated.
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#2 lynnelise

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Posted 05 April 2011 - 09:14 AM

Blood tests are frequently false negative but rarely false positive. If your body was ok with gluten it wouldn't make antibodies to it regardless of the amount consumed. Your bloodwork indicates that your body sees gluten as an invader and is trying to fight it. If you keep eating it you may feel fine for awhile but eventually you'll see the results. Lots of people don't have noticable symptoms and by the time they discover the problem it's too late and they have cancer.
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#3 NateJ

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Posted 05 April 2011 - 09:18 AM

I agree, I"m not sure how old you are now, but my symptoms got progressivley worse over the years. It started out with an occasional sign or sickness here, and eventually 10 years later I was in the ER 4 times in one year.
So tread carefully if you decide to not go gluten free. Sometimes the disease is so gradual you may not notice it until you have all kinds of different ailments.
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#4 AliSko

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Posted 05 April 2011 - 09:31 AM

But I thought a blood test was only a potential indicator for Celiac. Am I wrong? Can you not have Celiac but have a high blood test? Does that mean a person is just gluten intolerant/sensitive?
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#5 cassP

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Posted 05 April 2011 - 09:36 AM

i think it would be a good idea for you to eat a healthy wholesome and gluten free diet for the rest of your pregnancy for sure.. (and after too)... but especially during your pregnancy- and i wouldnt do the endo while you're pregnant.

if you feel ok with it- u can post your results up here- we would love to analyze them for u
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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 :(

#6 AliSko

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Posted 05 April 2011 - 09:39 AM

i think it would be a good idea for you to eat a healthy wholesome and gluten free diet for the rest of your pregnancy for sure.. (and after too)... but especially during your pregnancy- and i wouldnt do the endo while you're pregnant.

if you feel ok with it- u can post your results up here- we would love to analyze them for u



Definitely. I will continue gluten free throughout this pregnancy at the very least.

I will scan my test results and post - I would love some feedback. Thanks everyone.
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#7 Chiana

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Posted 05 April 2011 - 09:57 AM

If you did the biopsy now, you might not show damage anyway, as you have been on a gluten-free diet. If you were to get a biopsy, you would want to be eating gluten at every meal for months before-hand.

The low-carb lifestyle may explain why you have been seemingly asymptomatic, and could also lead to a false negative on the biopsy. The biopsy just looks for damage to the intestinal lining due to repeated inflammation from the antibodies. If you don't have gluten very often, your body may be able to heal well after each incident, leaving little or no evidence.
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#8 NateJ

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Posted 05 April 2011 - 10:33 AM

from what i understand the blood test is just a measurement of the antibodies your body produces to fight gluten. Some people will have negative results to this test or have readings completely different from someone else. Its not a positive/negative test but a measurement of antibody levels. The test results are open to the interpreation of a Dr. who may or may not have the same opinion of another Dr.

The biopsy is the only real way, but even that just tests if you have intestinal damage or the sign of villi damage in your small intestine that most GI look for. My GI told me that you can have no damage at the time of the scope and still have Celiac.
I had inflammation and scarring in my intestine and the GI told me everything was normal, but another GI saw the tests
and reviewed my pathology slides and said, yeah you have Celiac.
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#9 tarnalberry

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Posted 05 April 2011 - 11:02 AM

If your blood tests showed antibodies to gluten, it means that your body thinks it's worth attacking. Someone without celiac will test negative no matter how much gluten they eat. If the test included tTg, that means that you body is producing antibodies that attack itself - these are straight up autoimmune antibodies and note that your body is damaging itself. Definitely not something that someone without celiac is going to test positive for.

(Gluten sensitivity is a slightly different matter, and much more difficult from a testing perspective.)

Right now, with the pregnancy hormones you have going through your body, it's not really surprising that you'd find it hard to notice a change. This is pretty much a different body than you had 4.5 months ago. And it's not like it goes right back after the birth - your hormones gradually go back to normal, but it takes a long time and won't be finished until you're done breastfeeding (if you choose to do that) and sleeping more normally.
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Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
Bellevue, WA

#10 ravenwoodglass

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Posted 05 April 2011 - 01:01 PM

If your blood tests showed antibodies to gluten, it means that your body thinks it's worth attacking. Someone without celiac will test negative no matter how much gluten they eat. If the test included tTg, that means that you body is producing antibodies that attack itself - these are straight up autoimmune antibodies and note that your body is damaging itself. Definitely not something that someone without celiac is going to test positive for.


This was very well put. If you have a postive blood test then you definately need to stay on the diet. Some of us have a lessening of symptoms when pregnant, I don't know why. That was definately the case for myself. However having a baby can also excaberate the symptoms after we give birth. For some women childbirth is the trigger for the disease. Doctors don't just test for celiac out of the blue, in fact some of us have to fight to get tested, so the fact that your doctor tested you indicates that there was something that made him think you should be screened. Do stay on the diet, it may be a bit hard at first but you will get used to it and you want to be healthy and happy when you are chasing that little one around.
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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)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
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 with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity 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)

#11 T.H.

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Posted 05 April 2011 - 09:24 PM

There's a rather recent study that might be applicable in your case, as well. They tested celiacs with positive blood tests and positive biopsies, and compared them to people with positive blood tests and negative biopsies. They found that both shared some metabolic problems. The speculation is that the blood test may be catching people with this disease before the damage to the intestine is always visible.

Or in other words...whether you get the biopsy or not, you'd likely want to stay on the diet.

An article on the study can be found here:
http://www.celiac.co...ents/Page1.html


Also, I know you're not feeling better now, and you weren't feeling bad, and perhaps that won't change. There are definitely some here who really have no signs that they are having trouble with gluten, you know?

If you are like me, however, you may notice some truly weird things that turn out to be from gluten that you never realized. Really...weird things. Some examples?

- sensory overload. Sounds are more annoying, tastes are too strong, lights are too bright, pain is more intense - not always all senses at once, but both my daughter and I have this. I always thought we just didn't like crowds and concerts sometimes. :D But now, off of gluten, it's not a problem. And if we get gluten accidentally, it comes back. Met a few others who have this same thing, now.

- aches and pains that seem like just getting older, but turn out to be gluten.

- soft tissue injuries, like carpal tunnel, plantar fasciitis - these lessened considerably or completely went away off of gluten.

- clumsiness. My daughter and I both have our balance affected by this, but it was always just enough to make us a little more clumsy than people around us. Never enough that we thought it was anything more than 'just us.'

- memory. Off of gluten, we have better memory, better ability to think and plan. Better ability to comprehend.

- Sleep issues. Off gluten, there was remembering dreams. Less insomnia and light sleeping, or less sleeping too deeply.


There's just SO much weird stuff that can be caused by gluten - allergies, bones, joints, organs, brain - anything that needs nutrients can be an issue. But some of these take longer to heal, and when you're pregnant? Most of those ache during the pregnancy anyway, LOL.


Wishing you a very smooth pregnancy and hope it goes well. Sorry you have to figure out the new diet in the beginning, and test the baby every few years for it and such, but hopefully there will be improvement to things you never even realized were wrong. :)
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T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive



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