LymeNet Flash: Tested positive for Celiac Sprue? (And I have Lyme)

This is topic Tested positive for Celiac Sprue? (And I have Lyme) in forum Medical Questions at LymeNet Flash.

To visit this topic, use this URL:
https://flash.lymenet.org/ubb/ultimatebb.php/topic/1/30463

Posted by Cap (Member # 57) on :

I got the results in from AGA (Anti Gliadin Antibody) and they were positive. This may explain why I had on and off bloating, but it could be caused by Lyme as well. Thing is when I first got sick and before I knew I had Lyme, I got the small intestine biopsy and it showed that I did not have flatteded villi. But I do have a positive AGA, which is a blood test to see if your immune system is fighting gluten. This test result shows up in Celiacs.

Since Celiac affects 1/130 people, there is a good change I may have this and Lyme.

The thing that does not make sense:

- I was healthy as a kid, despite eating bread and grains. Can you get Celiac in your mid 20's, out of the blue?
- I don't have flattened villi!

Can something else give me a false positive on the AGA? Yeast infection maybe? Anyone else have this issue? Could Lyme be confusing my immune system? And could Lyme be tripping the test?

For the test that I had, I tested at 22, which the threshold for Celiac was 20. So this sounds like a mild case, which may explain the late onset.

Thing is, I love bread. And when you are a Celiac, you have to avoid it. That's quite a sacrifice, I would feel better doing this if I knew the AGA was reliable in diagnosing the genetic condition.

Any feedback and info would help a lot, thanks.

[This message has been edited by Cap (edited 05 January 2005).]

Posted by tickd (Member # 1873) on :

My brother is 57 years old. He had open heart surgery last Feb. a couple of months later he started losing weight and could not keep food or liquids in. After 3 months and 105 pounds of weight lose it was discovered he has celiac. The doctor told him that it is hereditary (sp) and can surface at anytime in your life. Stress can cause it to surface. Since your body is stressed with lyme disease it may of triggered it. There are support groups out there that are really helpful. They have lists of foods that you can eat and have gathered information to share. It was a relief to him not to have to read every label at the grocery store. Gluten is in catsup, mustards, salad dressings to name a few. I hope this information helps you.
He is now doing fine. Has gained back weight and feels healthy.
Tickd

Posted by treepatrol (Member # 4117) on :

If your on abx's I would bet it was a yeast problem and stay off the breads anyhow to high of carbs=sugars=yeast.

Posted by Carryon (Member # 4951) on :

Hi Cap,

I was also diagnosed with gluten sensitivity/celiac at the same time that I found out that I had Lyme.

The AGA test is no longer recommended as the gold standard test. The 2004 NIH Consensus conference on Celiac recommends a celiac panel of tests which include the IGA antitissue transgluaminase (TTG) and the IgA (EMA) tests (these are blood tests).

The biopsy is used to confirm diagnosis but you can develop Celiac later in life so one negative biopsy does not mean that you will never get it.

You can have a stool test done yourself at http://www.enterolab.com/ This will give you a very good idea if you should be removing gluten from your diet.

I loved bread too but feel so much better not having it!

A good site for more info and support is the Braintalk site especially the "gluten file" at http://brain.hastypastry.net/forums/showthread.php?t=2132

Good luck in finding out answers and in your treatment for Lyme.

all my best,
Carryon

Posted by Lymelighter (Member # 5310) on :

My aga test was borderline and I have no GI symptoms. Yet, I still tried the Gluten free diet for a couple of months. It is a pain in the butt and the gluten free breads taste like building material.

I didn't feel any better off Gluten. Worth a try to rule things out but my LLMD didn't feel it was the cause of my symptoms.

Posted by oxygenbabe (Member # 5831) on :

Hey, thanx for that link to the enterolab site. The lecture by Dr Fine was really interesting.

I recently concluded I have celiac undiagnosed all my life. I did have the typical blood test for antibodies ten years ago but I already ate little wheat--apparently you have to be eating the equivalent of 4 pieces of bread a day for 3 months to get a really accurate test. In other words damage your body to prove you've damaged your body.

My aunt had celiac sprue and they told her she grew out of it. I never really investigated this but I now know you can't grow out of it. Now this may account for all the strange health problems the poor woman had.

Anyway, I've gone gluten free after reading about it and discovering that even small amounts of gluten will keep the autoimmune process going. I have noticed improvements in my digestion. This doesn't solve lyme disease, but it surely takes one load off my body, so I'm never going back to gluten of any kind. You just have to really be aware its in many processed foods. Even some forms of maltodextrin and other fillers.

I personally don't miss bread. You can eat a delicious baked potato with olive oil and sea salt...or pastas made from rice or mung bean noodles...you can also buy breads without gluten but I don't even like those too much as they have sugars in them...just eat natural, eat things nature made.

Posted by achey (Member # 6284) on :

Celiac Disease can present with it's classic Gi symptoms at anytime, or still do damage and remain asymptomatic.

I finally got a definitive dx for celiacs 3 years ago after a skiing injury. My hand was shattered, and on the x-rays my bones looked like dryied out chicken bones. After my surgery and hospitaliztion, the GI symptoms came out full bore.

Anyway, trauma to the body frequently brings celiacs to the surface.

I have been gluten free for 3 years and have recovered over 80% of my lost bone
density.

If you have celiacs, the only cure in to be completely gluten free. Even if flatten villi were not found in the biopies sample, that doen't mean that there is not damage.

Ceiliac disease will signifigantly impair the bodies ability to absorb nutrient, and heal.

Going gluten free is really hard in the beginning, but now I'd never think of going back on gluten. Once your body has a chance to heal, the littlest bit of gluten can really mess up your day of week, so I don't consider it an option... been there , done that!

Feel free to email me with questions .

Sorry for the news!

Posted by orrn (Member # 6672) on :

Cap,

I was told my daughter had Celiac Sprue before she was diagnosed with LD. She was 3 years old at the time.

After diagnosis and treatment for LD her continual diarrhea (I mean water, diarrhea) cleared up.

She eats a regular diet now and has had no more trouble with it at all. She is now 5!

I did not let them do the esophagoscopy on her, because with her other symptoms it just didn't make sense to me.

The ducks wanted to poke and prod her every time I turned around! What a thing for a 3 year old to go through.

After having a positive western blot (done by our LLMD) the ducks still wanted to do skin scrapings of her atypical rash.

They had proof right in front of them and they still wouldn't believe it. Such is LD!

I hope you feel better! Take care!

orrn

Posted by Cap (Member # 57) on :

Thanks for the replies, this info will help out a lot. I am going to ask my doctor about the IGA antitissue transgluaminase (TTG) and the IgA (EMA) tests and let you guys know what happens.

Happy New Year!