Hi :)

kds · Joined: 13 Aug 2008 Posts: 8

Hi, my name is Kim and I'm from Alberta, Canada.

I believe I've been misdiagnosed for many years. First it was IBS then it was fibromyalgia and every new symptom that I got rather than run any tests at all just got lumped into the "its fibro, live with it". 2 years ago I had 90% of my thyroid removed due to Hashimoto's disease. The last year has been the worst. Abdominal pain, bowel problems. Beginning of the year my dr. sent me to a general surgeon who ordered an abdominal US which found some gallbladder polyps. He then ordered an endoscopy. The day of my endoscopy I learned my grandmother was seeing a dr. for related problems and the dr. suspected celiac. I mentioned this to the surgeon and he said he would take a look during the procedure. A month later I see him for the results and the good news is everything looks good. Bad news is he only took 1 sample for biopsy for celiac. So I asked if he would do a blood test at least he refused said the biopsy was good so no need for a blood test and there is no way I would have celiac. Then he scheduled a colonoscopy which I am having done in 1 week to check for Chrons/colitis.

I am so fed up with doctors. I did the tests from Enterolab and I should have my results in the next few days.

The past week I've been doing a GF diet and noticed a huge improvement already. Well except for yesterday. We went to Applebee's for supper and I believe I got glutened. I was sick last night and most of today.

So thats me and my history. Smile

mrsppmrxky · Joined: 09 Oct 2004 Posts: 1471 Location: GF Kitchen

Sorry about the trouble with your dr! It is very frustrating! Just keep in mind that not everyone that has trouble with gluten is celiac. You could have a gluten sensitivity if the testing is negative.

If you are okay with the the certificate that says a certain thing, then continue with the GF diet and see if you feel better. My DD had been through so much with her health, we thought that she was going to die. When we talked with the dr. and found that she is doing better on the GF diet, we decided not to go back on gluten for the testing.

This is a personal choice and not everyone here agrees with the deicison that we made and they wanted further testing for themselves. Either way you decide to go, we are welcoming and will be glad to help you down the GF trail.

Peek through the recipe section that we have and if you have questions, post and we will be glad to help you where we can.

Welcome to the group!
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corgilover · Joined: 07 Aug 2008 Posts: 13 Location: NW OH

Hi Kim,
I am new to this forum too. My sister has CD and I have had many symptoms over the last 16 years that could be CD. I will be having my blood work done Monday along with a DNA test. I went with Prometheus Labs. I found the info from this forum.

I work in medicine and even I get very frustrated with today's irresponsible answers from Dr. You can't ignore your symptoms. If by eating gluten free helps you than go for it. If you are having labs done, you might want to continue eating gluten though. Your labs may come back negative for CD.

I have learned a lot from this forum. At least here you feel like people understand and are willing to offer assistance.

Hope you feel better soon Smile

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Have A Blessed Day!

cruelshoes · Joined: 23 Sep 2005 Posts: 2550 Location: Washington State

Welcome aboard. Ask any questions you have.
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-Colleen
Dx 8/05 via bloodwork/biopsy
10-YO son Dx 11/05 via bloodwork/biopsy
Daughters (12 and 2) have neg. bloodwork

A woman is like a tea bag-you never know how strong she is until she gets in hot water. - Eleanor Roosevelt

aklap · Joined: 02 Oct 2004 Posts: 8607 Location: WI, USA

Hi Kim,

Welcome!

Sorry to hear of your troubles. Sad

If it walks like a duck, quacks like a duck... Wink

Eating out is risky, but you'll find that an Applebee's is not the not the most GF friendly place. You might consider not dinning out for awhile until you get some things figured out.

Good luck with the tests, please let us know how they turn out.
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

The Edifying Conscience · Joined: 29 Aug 2005 Posts: 2442

ostrich · Joined: 30 Mar 2006 Posts: 4170 Location: Nebraska

aklap · Joined: 02 Oct 2004 Posts: 8607 Location: WI, USA

kds · Joined: 13 Aug 2008 Posts: 8

I just received my results back. No wonder I've felt so crappy. Stupid doctors.

A) Gluten Sensitivity Stool and Gene Panel Complete *Best test/best value
Fecal Antigliadin IgA 8 (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 10 Units (Normal Range <10 Units)

Quantitative Microscopic Fecal Fat Score <300 Units (Normal Range <300 Units)

Fecal anti-casein (cow’s milk) IgA antibody 8 Units (Normal Range <10 Units)

HLA-DQB1 Molecular analysis, Allele 1 0201

HLA-DQB1 Molecular analysis, Allele 2 0502

Serologic equivalent: HLA-DQ 2,1 (Subtype 2,5)

Acute/Chronic Colitis Stool Test
Fecal lactoferrin Negative (Normal - Negative)

Interpretation of Fecal Antigliadin IgA: Intestinal antigliadin IgA antibody was below the upper limit of normal, and hence there is no direct evidence of active gluten sensitivity from this test. However, because 1 in 500 people cannot make IgA at all, and rarely, and some people can still have clinically significant reactions to a food antigen despite the lack of a significant antibody reaction (because the reactions primarily involve T cells), if you have a syndrome or symptoms known to be associated with gluten sensitivity, a gluten-free diet may help you despite a negative test. If you have no syndrome or symptoms associated with gluten sensitivity, you can follow a gluten-containing healthy diet and retest in 3-5 years; or you may opt to go gluten-free as a purely preventive measure.

Interpretation of Fecal Antitissue Transglutaminase IgA: You have an autoimmune reaction to the human enzyme tissue transglutaminase, secondary to dietary gluten sensitivity.

Interpretation of Quantitative Microscopic Fecal Fat Score: Provided that dietary fat is being ingested, a fecal fat score less than 300 indicates there is no malabsorbed dietary fat in stool indicating that digestion and absorption of nutrients is currently normal.

Interpretation of Fecal anti-casein (cow’s milk) IgA antibody: Levels of fecal IgA antibody to a food antigen greater than or equal to 10 are indicative of an immune reaction, and hence immunologic “sensitivity” to that food. For any elevated fecal antibody level, it is recommended to remove that food from your diet. Values less than 10 indicate there currently is minimal or no reaction to that food and hence, no direct evidence of food sensitivity to that specific food. However, because 1 in 500 people cannot make IgA at all, and rarely, some people can still have clinically significant reactions to a food antigen despite the lack of a significant antibody reaction (because the reactions primarily involve T cells), if you have an immune syndrome or symptoms associated with food sensitivity, it is recommended that you try a strict removal of suspect foods from your diet for up to 12 months despite a negative test.

Interpretation Of HLA-DQ Testing: HLA-DQB1 gene analysis reveals that you have one of the main genes that predisposes to gluten sensitivity and celiac sprue, HLA-DQB1*0201 or HLA-DQB1*0302. Each of your offspring has a 50% chance of receiving this gene from you, and at least one of your parents passed it to you. You also have a non-celiac gene predisposing to gluten sensitivity (any DQ1, DQ2 not by HLA-DQB1*0201, or DQ3 not by HLA-DQB1*0302). Having one celiac gene and one gluten sensitive gene, means that each of your parents, and all of your children (if you have them) will possess at least one copy of a gluten sensitive gene. Having two copies also means there is an even stronger predisposition to gluten sensitivity than having one gene and the resultant immunologic gluten sensitivity or celiac disease may be more severe.

Interpretation of Fecal lactoferrin: A negative fecal lactoferrin test indicates you have no neutrophilic inflammation in your stool typical of acute and/or chronic colitis. This essentially rules out ulcerative colitis and Crohn’s colitis, however it does not completely rule out microscopic colitis.

aklap · Joined: 02 Oct 2004 Posts: 8607 Location: WI, USA

mrsppmrxky · Joined: 09 Oct 2004 Posts: 1471 Location: GF Kitchen

aklap · Joined: 02 Oct 2004 Posts: 8607 Location: WI, USA

Hi Kim,

Thanks for posting the results.

I'm a bit confused tho...

kds · Joined: 13 Aug 2008 Posts: 8

I was totally confused about that as well.

I read this on their site:

What does it mean that my antigliadin antibody level is just below the upper limit of normal?
All clinical laboratory tests must define a normal range that best distinguishes those with disease from those without. Depending on what range is used to define normal will determine how many people with disease will fall into the normal range, and conversely, how many people without disease will fall into the abnormal range. Our determined cut off for normal of 10 Units was derived after years of comparing antibody levels with gene and malabsorptive test results, as well as clinical histories before and after treatment with a gluten free diet. Although our stool test is multitudes more sensitive in picking up gluten sensitivity than blood tests, no single diagnostic test can rule out gluten sensitivity with 100% certainty (we estimate our antibody test misses about 1 in 500, about equal to the frequency of IgA deficiency in the general population). Thus, while it is very unlikely that a person with an antigliadin antibody level in the normal range has active gluten sensitivity, anyone with symptoms of gluten sensitivity and/or having an autoimmune disease, especially if accompanied by an antibody level just below the cut off, or with a gluten sensitive gene and/or intestinal malabsorption, should consider a 6-12 month trial of a gluten free diet, looking for improvement in symptoms, autoimmune disease severity, and/or intestinal malabsorption. It is only in this population that a gluten free diet should be considered a "trial"; all other people must consider gluten-free diet for positive tests definite and permanent therapy.

So based on the fact that I do have symptoms, I already have 1 dx autoimmune disease (Hashimoto's), I have a celiac and a gluten sensitivity gene which could predispose me to celiac or at least gluten intolerance, AND the fact I have noticed a huge.. HUGE improvement in my symptoms this past week while avoiding gluten I will continue with a gluten free diet.

Maybe I am the 1 in 500 who can't make IgA. Here's another odd thing about me. Before my thyroid disease was dx. I spent years going for my annual TSH test, I had numerous ultrasounds, biopsies, blood tests for thyroid antibodies. Everything always came normal. Deep down I knew something was wrong. Once my thyroid enlarged to a point that I was having compression problems on my windpipe my ENT told me it needed to come out. After the surgery he said that was the biggest, nasiest thyroid gland he has ever seen. Pathology later revealed Hashimoto's. The ENT said the gland was so badly destroyed there wasn't anything left of it to attack which would explain why all my tests came back as normal.

My body is just a mess. Laughing

aklap · Joined: 02 Oct 2004 Posts: 8607 Location: WI, USA

Hi Kim,

Keep an eye on things...we want to you to be safe, happy & healthy!

It's good to hear that you are seeing improvements with the dietary changes.

The mystery disease TEC was describing is Addison'sDisease. Definitely not something to mess around with.
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Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

isto · Posted: Sun Aug 17, 2008 7:27 am Post subject: