[Cyndi]

Hi, I'm on another list with KimS, who suggested I post here. I have a few food reactions myself, but my daughter (age 20 months) has a bunch. Because what I eat can contaminate my milk, I have changed my diet to accomodate hers. For the record, I'm very experienced with food allergies and sensitivities (and I'm chemically sensitive) and I have friends with celiac.

It took a lot of trial and error but I discovered that if my daughter eats gluten for a few weeks, she has diarhea and bowel accidents. If we go gluten-free for a month or more, it takes weeks for the symptoms to come back upon reintroduction (which is why it was so hard to figure out), but if she is only gluten-free for long enough for the symptoms to disappear (a few days), then she will get new symptoms on a single trial. I also tested rye, kamut, and spelt, and they were positive, so I am sure it's gluten, not just wheat. I was careful to test as pure as possible, and we were on a yeast-free diet during this time.

While doing all this, I noticed that I feel better off of gluten and get a "yecky" feeling when I eat it. No overt symptoms, but it's quite noticible. I seem to be okay with trace amounts, as is she.

I had a doctor's appt a couple weeks ago and was getting blood tests anyway, so I asked to be tested for celiac. I had been eating gluten daily for weeks at that point. I stopped the day after the test. My doc says the tests were negative and, according to the lab reference ranges, they are negative. Kim and some others have said my results may actually be a sign of celiac, or at least borderline.

Gliadin antibioties
Gliadin AB, IGA - 15 U/ml (normal is <45)
Gliadin AB, IGG - 11 U/ml (normal is <45)
TISS.Transglutamin.IgA <15 units (normal is <20)
Total IgA 111 mg/dL (normal range 89-581)

I would like to know for certain (short of getting a biopsy) because if I do have celiac, I will go on a strict gluten-free diet for me and my daughter and have her tested when she is old enough (3 years??). If I don't have celiac, I will eat very little gluten and not worry about trace amounts or the occasional cheat. Also, I just like to know these things.

In case it's useful, my daughter's other food sensitivities/allergies are egg, orange, and citric acid (the additive), with possible problems with yeast/vinegar. We eat almost no dairy as I don't do well with it regularly, but my daughter seems okay with it. I used to be allergic to yeast but am not anymore. I do not tolerate preservatives or most additives/junk.

My daughter is healthy but had a lot of antibiotics before and after birth. I have a history of multiple chemical sensitivity, fibromyalgia, chronic fatigue syndome, growth hormone deficency (take injectable HGH), and asthma.

Thanks for any insights.

Cyndi

[jccgf]

Gliadin antibioties
Gliadin AB, IGA - 15 U/ml (normal is <45)
Gliadin AB, IGG - 11 U/ml (normal is <45)
TISS.Transglutamin.IgA <15 units (normal is <20)
Total IgA 111 mg/dL (normal range 89-581)


Your blood tests are negative, but there are many people who are gluten sensitive and test negative for Celiac Disease. If you haven't had the chance to do so, you might want to read the Diagnostic Testing page in The Gluten File.

While some studies show that 20% of biopsy proven celiacs have negative blood work, we don't know whether or not that might apply to you.

At this point, my suggestion would be to listen to your gut feeling . If you see positive changes when off gluten, and if you have health problems associated with gluten sensitivity... you may have enough answer already.

There is no way for us to know for sure if you have Celiac Disease, or may develop it in the future. A positive blood test/biopsy for Celiac Disease rules it in, but nothing can really rule it out completely as it is possible to test negative for years and then later turn positive.

Some people linger in a "pre"celiac stage for years before testing positive, and others may just linger for ever... symptomatic, but never passing the test. There are many people who are gluten sensitive with serious symptoms from gluten, who don't test positive for celiac disease.

Here are some good articles... the top two on "Celiac Disease" and the last two focus on a broader spectrum of gluten sensitivity.


Detecting Celiac Disease in Your Patients by Harold T. Pruessner, MD

Gluten-Sensitive Enteropathy (Celiac Disease): More Common Than You Think by David A. Nelson, JR, MD, MS (AAFP)

Gluten intolerance: a paradigm of an epidemic by Stacy Astor Shaul

"Early Diagnosis Of Gluten Sensitivity: Before the Villi Are Gone" by Kenneth Fine, MD


Good luck!

Cara

[KimS]

Hi Cyndi.

Glad you made it.

I didn't realize you also were dealing with ghd.

Here is a whole page of how it can be related to celiac:
http://www.ncbi.nlm.nih.gov/entrez/q...arch&DB=pubmed

I also used to have asthma. I am very strict with my diet because if I'm not, my breathing is one of the first things that will be affected. Being very strict, I have no asthma at all. This is not unusual. I have met many people via this network, who 'cured' their asthma with a strict gf (and other things) diet.

[NancyM]

I didn't bother testing blood because I figured the results would be garbage. I did a dietary trial and that convinced me of everything I needed to know. Then I got tested by a stool test through Enterolab.com. I believe the autoimmune issues I've been wrestling with throughout my life were the result of gluten intolerance, which causes leaky gut. So I've been very, very careful to adhere strictly to the diet, even though I probably don't react strongly to small doses. I think the long term damage to your health can be very significant. I feel like I need to be as fanatical as someone with full blown, diagnosed celiac disease.

[diamondheart]

Hi Cyndi,

Welcome!

If you don't feel well eating gluten, then you could definitely be gluten sensitive. I was never diagnosed by blood tests. I have been diagnosed by alternative testing methods. I have seen three different practitioners, and they all said that gluten doesn't agree with me. In addition to gluten, soy, dairy, corn, quinoa, and nuts do not agree with me. When I cut them all out of my diet, I feel better. I'm working to heal my gut to see if I can start adding some of them back in. You also may not be celiac but may have leaky gut syndrome, which is what I think I have. Then it's a chicken and egg thing. Which came first? The food sensitivity or the leaky gut? If you have taken a lot of antibiotics, chances are you have leaky gut syndrome. Also, considering that you have chemical sensitivities, then you may also be sensitive to these types of "modern" foods that have been highly modified over the years (gluten grains, dairy, corn, and soy). These foods are not the same foods that were raised and eaten 200 years ago.

You may also consider genetic testing for celiac disease/gluten sensitivity (Enterolab tests for both) and testing for leaky gut syndrome.

Claire