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» LymeNet Flash » Questions and Discussion » Medical Questions » Celiac help please

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Author Topic: Celiac help please
katc
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Can anyone with a positive celiac biopsy contact me?

I have one, but I don't think its celiac.

I know a lot of people with Lyme get celiac symptoms.

Just wondering if anyone can share there story w/me so I can see if there are similarities.

Thanks

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jkmom
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If you have a positive biopsy, I don't think there is any doubt that you have celiac.

I didn't have a positive test, but I had many non-GI symptoms go away when I gave up gluten.

Celiac disease is a much better answer than Lyme Disease. Even if you have Lyme, too, some of your symptoms will probably improve if you go on the GF diet, if you haven't already.

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Leelee
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I don't know if I have Celiac's Disease or not. I was just tested for wheat sensitivity and was found to be highly positive.

My LLMD appointment is in a couple of weeks so I will discuss an endoscopy for Celiac's then.

From what I have read Celiac's is not always detected with a biopsy but I have never heard of it being a false positive.

May I ask what your symptoms are? I was in shock when I found out I was gluten sensitive (also milk and soy positive). It's been a couple of weeks since I have gone gluten-free and my stomach is a lot better although still not perfect.

--------------------
The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr

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n.northernlights
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LymeMd mentions pseudo-celiac on his blog, with slightly positive blood tests but negative biopsies, from lyme disease.
Over at celiac.com some have mentioned a kind of temporary celiac that goes away after successful treatment of lyme disease.

I know of someone who can eat gluten again after lyme was put into remission.

I really do not know if it can be temporary after a positive biopsy, but it should not surprise me.

nora

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Jill E.
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I went gluten-free before being bitten and used to write the newsletter for my local celiac disease support group.

The biopsy is considered the gold-standard of celiac testing, although there can always be false negatives of bloodwork and even false negatives of biopsies if not enough biopsies are taken throughout the small intestine.

However a positive biopsy would indicate that the villi are already flattened.

Did you have any blood work? Prometheus Labs here in San Diego is considered the best in the nation for celiac testing. For true celiac disease, you need to have one or both genes. Without those genes, you may not have celiac disease but could still have a gluten allergy or sensitivity. You could have your genes tested through Prometheus if you wanted, although many people carry the genes and don't necessarily get the disease.

What is making you doubt the biopsy results? I never had the biopsy. Eating gluten-free is getting easier and easier these days. So many more stores and restaurants are offering gluten-free food. It's a nuisance but not nearly as much as it was years ago. Please don't fear it.

Celiac disease causes malabsorption of nutrients, so it can cause anemia, osteoporosis, as well as a slew of symptoms. I'd rather eat gluten-free!

Take care,
Jill

--------------------
If laughter is the best medicine, why hasn't stand-up comedy cured me?

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sixgoofykids
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If you had a positive celiac biopsy, you have celiac disease. Celiac can be triggered by a stress to your body, and Lyme can certainly be that stress.

--------------------
sixgoofykids.blogspot.com

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TX Lyme Mom
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There is a lab which specializes in testing for celiac via stool culture, which does not require a doctor's "permission slip" (aka: "lab order") to obtain the testing - except in NY & MD, where state law does not permit patients to order lab tests in this manner.

https://www.enterolab.com/Home.htm

The Comprehensive Panel with Genetic testing included ($369) is the recommended test to choose because it is the best value economically -- ie, the first panel in the left column.

https://www.enterolab.com/StaticPages/Frame_TestInfo.htm

Stool testing is now considered to be even more accurate than blood testing for diagnosing gluten intolerance or celiac disease. (It's considered to be "true celiac" if you have the genetic markers for it, which 30%-40% of the population have, but it's considered to be "gluten intolerance" instead if you do not have the genetic predisposition for it - namely, HLA DQ2 &/or HLA DQ8.

This is a highly respected lab. Check out the professional qualifications of the lab director, Dr. Ken Fine, who BTW will be an invited keynote speaker at the AAEM's annual meeting in Oct.

https://www.enterolab.com/StaticPages/Frame_Cirrculum.htm

Also, be sure to read the feedback testimonials from satisfied clients:

https://www.enterolab.com/StaticPages/Frame_Testimonials.htm

The idea of testing this way is to catch "silent celiac" early BEFORE there is any serious damage to the intestinal mucosa -- ie, the telltale signs of "villous atrophy" found by endoscopic biopsy.

If you feel that you might be sensitive to other foods, such as eggs, yeast and soy, you can add in an additional panel to test for those items for an extra $199 - third panel in the left column.

I've heard that they are considering adding in a test for corn in the future because corn is a known offended in folks with food sensitivities -- although my guess is that it's the toxic mold associated with corn that is the real culprit instead of the grain itself.

More later - must stop now to be on time for an appointment.

[ 08-04-2009, 10:45 PM: Message edited by: TX Lyme Mom ]

Posts: 4558 | From TX | Registered: Sep 2002  |  IP: Logged | Report this post to a Moderator
TX Lyme Mom
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I have time for one more quick note, which I'm putting into a separate post so that it will stand out. Here's the link to reliable and authoritative free info about celiac on the internet, sponsored by the Univ. of Chicago. (Click on Celiac 101.)


http://www.celiacdisease.net/

There are many other excellent websites with good information on celiac also, but one of the very best (and oldest) is:

www.celiac.com

OK, must really, really stop right now ... but back later with more good info on celiac from reliable authoritative sources.

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TX Lyme Mom
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Now, at last, here's the really good info which I didn't have time to do justice to earlier today.

The current issue of Scientific American (July/Aug., 2009) which is on the newstands now contains an excellent 8 page article on Celiac and "Leaky Gut" and AutoImmunity, written by a top researcher in Celiac Disease (CD).

There is a FREE version (text only) available on-line (link below), but the free version does not contain the beautiful color illustrations which make the details about "tight junctions" and leaky gut so much easier to comprehend.

http://www.scientificamerican.com/article.cfm?id=celiac-disease-insights

The link above contains feedback commentary from readers. The link below is to the text-only, print version of this same article.

http://www.scientificamerican.com/article.cfm?id=celiac-disease-insights&print=true

After you read the free, text-only version of this article, you will then be able to appreciate better the value of the missing color illustrations, and you will probably want to pick up a copy of the original copy sold on newstands now while it is still available because you will want to understand the complex details about leaky gut well enough to be able to explain it more clearly to family and friends.

This copy is a "keeper." Let's hope that your newstand hasn't already sold out of this issue. Look for a red cover with headline about Celiac & AutoImmunity in the upper right hand corner on the cover.

What you will come to understand after reading this article is that there are many different kinds of events, including toxins from a bad case of food poisoning, which can trigger "leaky gut" -- thereby opening the door to gluten's entrance into the blood stream and lymph system and setting off an immune response which can lead to a life-long problem of intolerance to gluten.

This new understanding about "leaky gut" takes gluten intolerance and celiac to a whole new level -- likewise with other similar GI problems related to other food intolerances or to other forms of IBD (inflamatory bowel disease) and IBS (irritable bowel syndrome).

Therefore, even if you don't have celiac or gluten intolerance but if you do have other kinds of GI symptoms, then you will probably still want to read this Sci. Amer. article also so that you have a deeper understanding of these otheer special GI "leaky gut" issues also.

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TX Lyme Mom
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quote:
Originally posted by n.northernlights:
LymeMd mentions pseudo-celiac on his blog, with slightly positive blood tests but negative biopsies, from lyme disease.
Over at celiac.com some have mentioned a kind of temporary celiac that goes away after successful treatment of lyme disease.

I know of someone who can eat gluten again after lyme was put into remission.

I really do not know if it can be temporary after a positive biopsy, but it should not surprise me.

nora

Nora,

Your quote about pseudo-celiac intrigued me. I searched the blog you mentioned and couldn't find anything about it there, so I did a Google search instead and guess what I found -- an article by LLMD V.S. which was published in a GI journal, of all places, which should make it more believable (perhaps) to skeptical GI docs. Anyway, here's the link to her article, followed by a quote from pg. 79 of the article:

http://www.lymeinducedautism.com/images/Belle_s_Palsey_of_the_Gut.pdf

"Now an adult, the patient's chronic ``ulcerative colitis'' and depression kept him from his job as a school janitor. (Antidepressant medication had mostly just helped his anxiety) When a colonoscopy was needed, a generous gastroenterologist biopsied Mr. F's
luminal tissues, which the referring doctor then sent for testing to a reference lab specializing in tick-borne diseases.

"Specimen analysis returned as PCR positive for etiologies of 3 diseases that infected his colon: Borrelia burgdorferi (Lyme disease), Mycoplasma fermentans (suspected of causing GI injury via proinflammatory cytokines) (25), and B. henselae (bartonellosisNow an adult, the patient's chronic ``ulcerative colitis'' and depression kept him from his job as a school janitor. (Antidepressant medication had mostly
just helped his anxiety.)

"When a colonoscopy was needed, a generous gastroenterologist biopsied Mr. F's luminal tissues, which the referring doctor then sent for testing to a reference lab specializing in tick-borne diseases. Specimen analysis returned as PCR positive for etiologies of 3 diseases that infected his colon: Borrelia burgdorferi (Lyme disease), Mycoplasma fermentans (suspected of causing GI injury via proinflammatory cytokines) (25), and B. henselae (bartonellosis).

"Each disease required its own unique treatment, all of which were successful and the patient's GI symptoms resolved. Mr. F's depression also cleared
and in its place there was a kind of chronic good cheer, off and on resembling mild hypomania."

The next paragraph of this same article goes on to describe another patient who finally received a positive PCR for Bb following the removal of her gall bladder when a sample was sent to the same reference lab specializing in Lyme diagnosis -- undoubtedly, Igenex, I would presume.


Special request to Nora (aka: NorthernLight):
Please send me a link to the quote from LymeMD's blog about "pseudo-celiac" if you can remember where you found it. I have a very special need for this quote -- let's call it "physician education" -- if you (or anyone else) would be so kind as to help locate that quote for me, please. I searched that website to no avail, so any help from anyone in finding the desired quote would be much appreciated. TIA.

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Lymetoo
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quote:
Originally posted by sixgoofykids:
If you had a positive celiac biopsy, you have celiac disease.

Exactly.

I have improved greatly on the gluten free diet. I was having terrible back pain, which went away with the diet. I also had gastric pain which sometimes was horrendous. I rarely had diarrhea.

--------------------
--Lymetutu--
Opinions, not medical advice!

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Jin
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Dear katc,
As the others stated, there seems to be no false positives with Celiac. Having this disease is no fun. I was seronegative, and going gluten-free helped tremendously. I become violently ill from a microscopic amount of gluten. Sharing a kitchen makes it more difficult than it normally would be if I did not have to live with my parents.

The disease tends to be genetic, and both sides of the family have a history of digestive problems. Despite this, Mom and Dad refuse to accept how serious this is and treat me like a hypochondriac. Then, they complain I need to go out and get a job when they are the reason I am too sick to pursue it often. Constantly being exposed no matter how careful you are will still prevent you from healing entirely.

You may not be on as tight of a budget as I am. Some of the foods out there are incredible, I just never get to eat them hardly at all. Thank God for Wal-Mart's Great Value Brand! If you like, I can e-mail you a list of gluten-free foods. I need to send it to Tutu as well.

Sincerely,
Jin

--------------------
Celiac Disease (2007)
Candida Overgrowth (2006)
Thyroid Disease (2004)
Gallbladder Disease (removed- 2003)
Fibromyalgia (2001)
Ovarian Cysts (5 in less than 10 months - 2000)
Anemia (2000)
IBS (1999)
Acid Reflux (1999)

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