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Confusing Diagnosis
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Hello -

I have tested positive for the Celiac gene. I have a laundry list of Celiac symptoms including chronic D, stomach pain, bloating, joint pain, neutropenia, psoriasis, sporadic cracks on the sides of my mouth, sporadic canker sores, tingling feet and hands etc etc. If I eat gluten, I feel absolutely awful immediately. Hands swell, fecal incontinence the next day, stomach pain, swollen hands, itchy skin and eyes etc. In 2004 I tested negative for Celiac on the non-genetic test and was told I have IBS. This month, I demanded the genetic test due to increased symptoms (and more research on my part). Between the negative non genetic test and the positive genetic test, I gave birth to three children and have experienced more than usual stress. My doctors (a hematologist for neutropenia, regular MD and GI all decided I needed an endoscopy to confirm the suspected Celiac. BTW - this would be my third endoscopy. I had two others in 2010 for an emergency food impaction and a retest because of raised eosinophils (that turned out negative upon second exam). I just recieved the results - NEGATIVE for Celiac. No real villi damage. My doctor said my villi looked "sandy" but not flat. I do not have anemia (just neutropenic and also low platelets) or low B12 so I am clearly able to absorb nutrients.

I am SO confused. I suppose the answer is to just go gluten-free? Possibly just latent Celiac? But what about all the zillion symptoms? Anyone have any advice?

Many thanks in advance!

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Were you gluten light or gluten free before testing? That will cause a negative result. How many biopsies did your doctor take? They should have taken around 6 or 7. I have never heard of 'sandy' appearing villi but your villi don't have to be completely flat for diagnosis. Do you have a copy of the results? If you do post them here as there are folks that can help interpret them.

It sounds like you react strongly to gluten. Keep in mind you don't need a doctor's permission to be gluten free and unfortuntely some of us will have negative test results but still react to gluten.

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Give me more information on....

the eosinophil count

any other notations on the condition of esophagus, small intestine, and top of stomach

Lab notations on # of biopsies, with results

the time of year symptoms become worse

time of year the indoscopies were preformed (did symptoms increase late summer early fall, when was the endoscopy preformed ~before or after a frost freeze?)

have you been keeping a food journal?

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Ravenwood is right, you can have celiac disease without passing a test for it. False negatives do happen, while false positives are rare. It is also possible to have a reaction to wheat that is not celiac disease but can cause similar symptoms. The article linked below talks about this newly identified condition.

http://Non-celiac wh...ists/Page1.html

Did you get a copy of your pathology report from the lab? There are varying levels of damage in celiac disease and they don't all look like totally flat villi. Totally flat villi is the worst damage level, there are intermediate stages between normal and the worst.

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Hello -

I have tested positive for the Celiac gene. I have a laundry list of Celiac symptoms including chronic D, stomach pain, bloating, joint pain, neutropenia, psoriasis, sporadic cracks on the sides of my mouth, sporadic canker sores, tingling feet and hands etc etc. If I eat gluten, I feel absolutely awful immediately. Hands swell, fecal incontinence the next day, stomach pain, swollen hands, itchy skin and eyes etc. In 2004 I tested negative for Celiac on the non-genetic test and was told I have IBS. This month, I demanded the genetic test due to increased symptoms (and more research on my part). Between the negative non genetic test and the positive genetic test, I gave birth to three children and have experienced more than usual stress. My doctors (a hematologist for neutropenia, regular MD and GI all decided I needed an endoscopy to confirm the suspected Celiac. BTW - this would be my third endoscopy. I had two others in 2010 for an emergency food impaction and a retest because of raised eosinophils (that turned out negative upon second exam). I just recieved the results - NEGATIVE for Celiac. No real villi damage. My doctor said my villi looked "sandy" but not flat. I do not have anemia (just neutropenic and also low platelets) or low B12 so I am clearly able to absorb nutrients.

I am SO confused. I suppose the answer is to just go gluten-free? Possibly just latent Celiac? But what about all the zillion symptoms? Anyone have any advice?

Many thanks in advance!

Have you had a recent Celiac blood panel done? Just because you were negative years ago does not mean that you stay negative. Those biopsy results sound suspicious to me. "Sandy"? Some docs won't dx Celiac unless the villi are totally flat, this is a common cause of falsely negative biopsies.

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Give me more information on....

the eosinophil count

any other notations on the condition of esophagus, small intestine, and top of stomach

Lab notations on # of biopsies, with results

the time of year symptoms become worse

time of year the indoscopies were preformed (did symptoms increase late summer early fall, when was the endoscopy preformed ~before or after a frost freeze?)

have you been keeping a food journal?

Hi there - I just picked up a copy of my results from my GI. Here they are:

Genetic test from Prometheus Lab:

Celiac Genes Detected:

Genotype: DQ2/other high risk gene

Increased Risk: 16X

Relative Risk: VERY HIGH

ENDO:

The duodenum was examined, and, while normal in appearance in many ways and while there appeared to be a villous pattern, there was a mildly gray discoloration to the mucosa because of a patchy white punctate appearance, as well as mild granular appearance.

Assessment and Recommendations:

The pateint has no marked abnormalities but there is a mild granular appearance to the duodenum. She has a history of chronic diarrhea that is unexplained, as well as neutropenia and thrombocytopenia. Autoimmune processes have been considered as a possibility of a hematological issue. She has had an extensive workup for the diarrhea with no diagnosis forthcoming.

FINAL DIAGNOSIS:

1. DUODENUM (BIOPSIES):

- No villous abnormality

-No enteritis/granulomas/microorganisms

-Morphologically normal

Microscopic exam:

1. Tissue includes through a layer of muscularis mucosae and nodules of submucosal Brunner glands and several oriented tall thin villi are represented. No increase in crypt regions or stromal mononuclear cells, no nuetrophils, and no granulomas. Columnar absorptive entercytes without inflammation and no surface organisms. Good quality biopsies and within normal limits, Six levels.

Gross Description:

1. Designated "duodenum" are FOUR tan tissue fragments ranging from 0.2x0.2x.15 cm to .35 x0.2 x0.2.

My GI wants to wait for my rheumatologist work up. Meanwhile, I went gluten-free anyway and have had NO diarreha. In general, I don't wat a lot of gluten since it makes me sick but now I am trying to be very mindful of where it lurks.

As far as the time of year - the endo was just performed. I live in LA so no frost freezes here. I was not keeping a food journal. My GI ruled out EE.

Thanks for taking the time to look at this!

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I don't think it would hurt your at all to try a gluten free diet. You may lack a formal diagnosis, but if you feel better and your symptoms clear up on one, they may take that into consideration and at least categorize you as non-celiac gluten intolerant.

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Update:

I went to a rhuematologist who ran a million tests. The only thing he found out of whack (besides my chronic neutropenia) was Vitamin D at level 25. As of Jan. 1, I decided to try going 100% gluten-free and lo and behold - I have ZERO GI problems. So whether or not my biopsy was conclusive or not, going gluten-free helps me a great deal. With the high likelihood genetically and the clearing of symptoms with no gluten, I am ready to diagnose myself as Celiac or non Celiac with gluten intolerance. Either way, gluten is not good for me so I am done with it.

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Sounds like a wise decision. The best of luck to you :)

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    • Today was the big day when I went to the GI and this is the first time I have felt heard and taken care of.  I told him about the two celiac blood tests  (in my first post) normal, he said that often happens, even with people who do have celiac and he needed to see the report and pictures from my endoscope.    I had filled out the appropriate Kaiser paperwork for Sutter to send all my medical records, but they ended up sending a disc with records to me, which Sutter said they could not use.  We also talked about gluten sensitivity v. celiac, and he said a lot of people are sensitive to gluten even if they don't have celiac. He said that my symptoms sound like classic IBS, which can be caused by any number of things.  He asked if I would try the FODMAP diet, which limits certain foods and requires no gluten. He said my symptoms sound like classic IBS, which he said can be caused by any number of things, including gluten sensitivity.  He has asked if I would try the FODMAP diet, which has restricted foods as well as no gluten because most gluten products have wheat in them.  So, since I am planning on going gluten free anyway, and I don't want another endoscope or blood tests if absolutely necessary, I am going to try the FODMAP diet and see what happens. I filled a consent form at the GI office today to have all my records sent to him so he can view the endoscope pathology report and photos.  I have an appointment with a Registered Dietician on September 30, and follow up appointment the GI in 4 months. 
    • gluten-free andee, according to an article on celiac.com  that talks about this subject see this link http://www.celiac.com/articles/24406/1/Celiac-Diease-and-Other-Autoimmune-Diseases-Equals-Low-Inflammatory-Diet/Page1.html Quoting the author "In the author's personal experience, a gluten-free diet has many limitations. The reactivity between alpha gliadin and corn, millet, oats, rice and dairy has been denounced as invalid by gastroenterologists and celiac disease researchers. While at a medical school in Missouri, biopsies did not show improvement in villous atropy until all alpha gliadin sources and corn, millet, rice and oats were removed from the diet."  Note this research is two years old but hilites the problem with non-gluten rice protein that you are having. It is the alpha gliadin sources that it causing the cross reactivity you are experiencing when you eat rice protein's. She says quoting "Celiac disease has gotten the most attention in antibody research, but the current data on cross-reactivity of antibodies is allowing a better understanding of gluten sensitivity. Antigen reactivity to alpha-gliadin can trigger immune attacks on many individuals beyond those with positive DQ 2, DQ 8 and TTG test results. She goes on to say "A low inflammatory diet customized to each person through testing for cross-reactivity or elimination diet protocols is needed to restore a state of health and well-being."  which sounds exactly like what you are doing. If you are still having problems after elminating rice a 30 day elimination of all the alpha gliadin proteins might be in order.  Corn is a common reactivity problem I hear with a gluten allergy from my friends as well as the obvious lactose problems that can be common among celiacs.  But rarely do you hear Rice allergy's brought up in context of a gluten allergy. I am glad you are making progress on finding your triggers. Read the whole article for yourself to see if there are nuggets of truth I did not highlight in my response. I hope this is helpful. Good luck on your journey to health. Posterboy,
    • One other thing - you might be able to tolerate some dairy if it's only the FODMAPs problem. I discovered that many cheese such as cheddar have effectively no lactose. And my wife sometimes makes 24 hour yoghurt, which also has effectively no lactose. Those have been fine for my tummy.
    • Celiacs got better gluten-free. Post-war, grains became available again and the same patients got sick again. 1952 the Gluten-Free Diet is officially ... View the full article
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