Seeking Diagnosis

[tandemonimom]

Long story; I'll make it as brief as possible. After gallbladder attacks led me to a nutritionist and elimination diet, I discovered eating gluten/wheat caused my attacks. I asked my doc about celiac and he agreed to biopsy, but HMO business-as-usual set the date 3 months away. Needless to say I wasn't eating enough gluten (since I had a gallbladder attack every time I did), so the results were marked "inconclusive."

Fast forward: after nearly 5 years of strict gluten-free diet (and no gallbladder problems) I started cheating here and there and discovered my gallbladder had apparently healed so that I could eat small amounts without an attack. Small amounts grew until now I am eating way more than I should, and the last couple of years have seen an increase in other problems (hypothyroid, endometriosis, carpal tunnel, low blood sugar, hair loss, tired-cranky-brain foggy, etc) including, recently, my gallbladder is getting a little "achy" again (no attacks yet). Finally it penetrated the brain fog that I really needed to clean up my diet again!

Here's the question. I know absolutely I need to go gluten-free, but my husband and I would both like the confirmation - is it really celiac, severe sensitivity, or what? I am torn though; eager to get "clean" right away and not continue for months convincing new doc to test, waiting for HMO to get around to testing again, and still the possibility of false negative. I understand EnteroLabs testing does not require the subject to be currently ingesting gluten. What are the pros/cons of quitting gluten right now and just doing testing with EnteroLabs?

Thanks!

[CarlaB]

Welcome!

Enterolab cannot tell you whether it's a gluten intolerance or celiac. It can only tell you whether you react to gluten, it cannot differentiate between the two.

A biopsy requires you to be eating gluten for quite some time, and a lot of it.

It's a personal preference how you go about testing and how much proof you need.

[natalie]

I had both. My entrolab numbers are listed below. I had negative blood work but a positive biopsy. Have you thought of having the genetic test?

[tandemonimom]

Have you thought of having the genetic test?

What is the genetic test and where is it done?

[natalie]

What is the genetic test and where is it done?

Most Celiacs have either the DQ2 or DQ8 gene. If you don't have either of those genes you most likely wouldn't have celiac. Entrolab offers it, it is a cheek swab.

[lob6796]

From Entrolab:

What role does genetic testing play in the diagnosis of gluten sensitivity?

Currently, tests are available to detect the genes that control the immune system's reaction to gluten. These genes are called human leukocyte antigens or HLA. There are several types of HLA genes within each person. It is a particular type called HLA-DQ that is most useful in the assessment of the probability that a person may be gluten sensitive. The reason gene testing assesses probability rather than disease itself is because some people have the genes for gluten sensitivity but have no detectable evidence of the immune reaction to gluten or have no symptoms. In such people, gluten sensitivity is still possible but the probability (or in other words the chances or the odds) is lower than in a person who may be having symptoms attributable to gluten or that has antibodies detected. HLA testing is most useful when there is diagnostic confusion about whether or not a person is gluten sensitive. Such confusion often stems from one of the following: atypical intestinal biopsy results, the presence of associated diseases (such as microscopic colitis) that may mask the expected improvement of symptoms when gluten is withdrawn from the diet, negative tests for gluten antibodies in the midst of suggestive symptoms or signs of gluten sensitivity or celiac sprue (see the paragraph below to understand the difference), or when there are no symptoms at all and the person or the doctor can hardly believe that gluten sensitivity is really present. Other situations that HLA testing is useful is when a person is already on a gluten-free diet, and for testing family members (particularly children) for the odds that they have or will develop gluten sensitivity.

What test should I order for diagnosis of gluten sensitivity?

The stool test for gluten sensitivity alone can answer the question of whether or not a person is gluten sensitive. However, combining this with the test for intestinal malabsorption and the gluten sensitivity gene test provides the most complete assessment of the condition of the person and the intestine relative to their gluten sensitivity status. The gluten sensitivity stool test, the anti-tissue transglutaminase antibody, the intestinal malabsorption test, and the gluten sensitivity gene test are now offered in a reduced price panel (Gluten Sensitivity Stool and Gene Panel Complete) that results in a $77 savings off of the tests ordered individually. Furthermore, for a limited time, a milk sensitivity stool test will be offered with this panel absolutely free, making the total savings for this panel $176.

If you have already been diagnosed as gluten sensitive or with celiac sprue, we recommend that about once a year you have the stool test for gluten sensitivity and the malabsorption test (gluten sensitivity stool panel) while staying on your gluten-free diet to be sure that you are not consuming gluten inadvertantly from hidden or unknown sources, and that your intestine has resumed its normal absorptive function. This is especially important after the first 1-2 years of diagnosis.

If you have not been diagnosed with gluten sensitivity but you have been gluten- free for more than a few weeks, it is best to stay off gluten and be tested on a gluten-free diet

[happygirl]

Your doctor can also order the genetic test.

Enterolab does NOT diagnose Celiac. The gold standard for a rock-solid diagnosis is the biopsy. You should also have the bloodwork done too----not just the biopsy (if you choose to go that route). For some, clearly positive markers on certain blood tests are enough to "know" its celiac w/o the biopsy.