LymeNet Flash: Who Has Celiac Disease?

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Posted by lymiecanuck on :

Hi,

Was wondering who has been dx'x with celiac after lyme, or before you knew you had lyme.

Did you see a major improvement in symptoms after starting GF diet? LYme type symptoms?

Have heard a lot of lymies have gluten intolerance, I have no doubt I am one of them and wonder about celiac disease for awhile. I am waiting on test results. Will do online test if nothing shows on the current test I took.

Thanks
Lymiecanuck

Posted by lymemomtooo (Member # 5396) on :

My daughter, when tested, was low positive to gliaden..Her endocrinologist said not to worry about it, since the number were so low. ..We tried a 2 week wheat and gluten free diet and she hated it.I have spent over $100 on flowers and recipe ingredients. Her symptoms were improved with the diet.

It would take a 2x4 to keep her on it however.

Posted by Gabrielle (Member # 5329) on :

My hubby was diagnosed with celiac disease 7 years before we knew he also has Lyme.

The diet solved only his diarrhea and the osteoporosis problem which he got probably due to malabsorption due to celiac.

The diet didn't do anything against existing Lyme symptoms - but he has very few. But I'm convinced his Lyme would be far worse without the diet.

We never felt the diet was hard - when you eat at home it's no problem. But you can forget about eating in most restaurants.

Gabrielle

Posted by Lymelighter (Member # 5310) on :

I was also low+ to celiac, tried the frickin' diet & it did not reduce my symptoms. It did increase one symptom...fury & anger, that a diet could be so regimented, limited, & ex$pen$ive.

I had another Celiac test a month later and it was -

LLMD didn't think Celiac was the cause of my symptoms but had to rule it out.

Posted by hiker53 (Member # 6046) on :

I have celiac as does my mother. I haven't been officially diagnosed yet with lyme, so I can't say the two are related.

What I can say is that the diet is not that hard to stick to. Sure there are days when I crave pizza or a bagel with cream cheese (I am allergic to dairy, too), but overall the diet has made me healthier. Don't get caught up in all of the expensive breads etc. Substitute yogurt instead of a sandwich, eat rice instead of pasta etc. Questions? Please e-mail me.

Posted by rdcallen (Member # 3987) on :

I have lyme disease, possibly a very old case, and my son (17 years old) has celiac. I am wondering about the connection between the two. Just now making the discovery that my kids may be infected.
When the lyme is treated does the celiac go away? I don't want to give him false hope.
He has been on the diet since he was a baby, 16 years now. I want to do some research on this first.

Of course it has been challenging but he has grown good and is otherwise healthy. The diet saved his life. It would be tough for an older child or adult. We have a new bakery here in the Detroit area that makes EVERYTHING gluten free and the products are wonderful. I don't know if they ship.

Posted by Lymetoo (Member # 743) on :

quote:
Originally posted by lymemomtooo:
I have spent over $100 on flowers and recipe ingredients.

Ok, took me awhile, but I finally figured this one out!

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oops!
Lymetutu

Posted by lymiecanuck on :

I have been seeing a connection and have no doubt lyme could cause this, or maybe people with it are more suspectible to lyme symptoms over someone else. Almost like immune problems. A

Am I making sense. Not sure, maybe you get it.

Some lyme running in families without obvious outward illness, cause low bacteria load, causing celiac? Subsequent bites/exposures to more lyme and co-infections making us sicker.

Lymiecanuck

Posted by liz28 on :

This magazine is a great resource for people with celiac disease: http://www.livingwithout.com/

Posted by Lyddie on :

Celiac disease is an autoimmune disorder. It's possible that Lyme could trigger this, just as it triggers positive ANA's and lupus-like, RA-like, Sjogren's-like, myositis-like etc. etc. illness. People with the HLA-DR4 genetic marker are more likely to have celiac disease, and certain other autoimmune problems- and also more likely to have chronic, hard-to-treat Lyme, or so I have read.

The question remains whether treating w/abx to "cure" the infection will also cure the celiac or other autoimmune problem, or whether the celiac persists after the infection is gone. Time will tell, I guess. As far as I can tell, noone knows as yet.

Posted by lymiecanuck on :

Lyddie,

Some days it feels like I have every autoimmune disease out there. I am being investigated for sjogren's now cause of severely dry eyes, I have lots of nerve stuff and head stuff. Probably celiac diesease and some kind of IBD still waiting on results and specialist.

Whole thing is crazy, cause so far immune system tests show no inflammation in body or ANA etc. But I have experienced so much inflammation it's unreal.

Lymiecanuck

Posted by frenchbraid (Member # 4225) on :

I recently found out that I have Celiac Disease along with other "digestive" disorders. It turns out that I have absolutely NO good bacteria in my intestinal tract. None at all. Also, I have a few "bad" ones that shouldn't be there. Candida is also having a field day in there too. There is apparently so much "bad" bacteria that it bumped out any room for the good bacteria to grow.

(yes, I took an arsenal of probiotics when I was on abx. Apparently when there is a digestive disorder, they, along with supplements will not be absorbed)

I wasn't digesting food any more and my hair started falling out. It was apparent that something was very wrong with my gut.

Long story short, my natural doctor insisted that I start on Elaine Gottschall's diet "Breaking The Vicious Cycle". She also put me on MAJOR probiotics. I can't even tell you the difference that it has made already.

According to Elaine, you will never get rid of yeast, or any other digestive issues unless you starve them of "specific" carbs. We can't eat sugar or any kind of grains whatsoever. Wheat is only one trigger. All of them must be removed in order to heal the digestive tract.

We can however eat fruit and use honey. The books explains very clearly how different foods "ferment" in the digestive system and create an unfavorable environment for the good bacteria and a wonderful one for the bad bacteria.

According to what I am reading, 1 out of 10 people carry the genetic makings of Celiac Disease. Other factors that can trigger it are stress, a chronic illness and antibiotics.

So, which came first? The Lyme or the Celiac Disease? Who knows? I have had stomach issues all my life and only had Lyme for 8 years. Or did I?

Also, following a Gluten free diet will NOT cure Celiac Disease. Like I mentioned before, you must eliminate ALL trigger foods.

The diet is very easy to follow and if you buy the follow-up book "Lucy's Cookbook", you will have an abundace of recipes to choose from. We just finished making peanut butter cookies this morning with Elaine's recipe and they are delicious.

frenchbraid

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Stay positive. Smile. People care.

Posted by breathwork (Member # 567) on :

Like Frenchbraid said, following the GF diet will not cure Celiac Disease...It's a life long autoimmune disorder.

BUT! Staying on the GF diet will stop the autoimmune cascade that is damaging the small intestine and allow the small intestine to heal.

It's not too much fun, but I feel better when on the GF diet....more energy, less gut problems, fewer headaches....And my gut can heal from what Celiac does to it....

Carol Ann

[This message has been edited by breathwork (edited 08 September 2004).]

Posted by lymiecanuck on :

Thanks for the replies.

Frenchbraid, my hair has been falling out like crazy the last months and the sjorgerns like symptoms are progressing and I feel it's malabsorption, like you mention.

Problem is internal medicne thought the same thing until she did my blood work, which came back normal.,(still dont' understand what blood tests DO show), and to see GI doc which I should have been sent to last year by idiot quack that I just got rid of. FINALLY!!!!!

I have appt with a chronic illness doc to test organs, do the art, and desensititions, finally, every thing costs so much. Go in October.

I am taking the primal defense and fibre supplements. Jarrodphillus. The primal defense is actually attaches itself, so I think I am digesting this one, going to get multi vitamin by garden of life as well.

I was surprised to read your post, as I have been searching your old posts lately about how you have been addressing the yeast problems. This must have been shocking news. You have done quite a bit about the yeast and learned alot.

I know the celiac diet is no fun. More to learn. I am going to get GF bread and cookies, cause I have been trying to just go without and this is not working and then I cheat. I aim to have the house GF and include my husband too, but this will be challenging. I told him you can have it at work, so as to support us. If I test positive I will get my son done right away, but will probably be negative, since he's only 3..

Lymiecanuck

Posted by frenchbraid (Member # 4225) on :

Hi Lymiecanuck,

Yes, we have been dealing with Candida for a while. But, we knew that it was not an easy thing to get over. We knew that it would take years to get it under control. What I wasn't aware of was the intestinal damage that it had caused.

I tested negative for Celiac Disease, but as my naturopath explained, that means nothing. Just like negative Lyme tests. She ran a urine and stool test first and based on the types of bacteria that I was lacking and the ones that I was abundant in, she was certain that I had Celiac. She ran a blood test to see what it said and it was negative.

But, what convinces her even more is that since starting the Select Carbohydrate Diet, I have lost 15 pounds. I have been eating like crazy and the pounds are just falling off. She says that it's the stored toxins that are being starved out that I'm removing.

The SCD is not a GF diet. Yes, it is GF, but there are so many other foods that cause the same effect and they too must be removed. I am feeling so much better. My abdomen is almost flat as a board and my hair has stopped falling out.

Our digestive tract is the number one source to getting our health back.

frenchbraid

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Stay positive. Smile. People care.

Posted by dmcbrayer (Member # 5296) on :

Enterolabs has a stool test for gluten intolerance. Mine was positive, and I also have the gene that predisposes me to celiac, but I had a biopsy done which was negative for Sprue.
The test results also show that I have a caseine intolerance.

Here are my results from enterolabs, if anyone here is interested in being tested, you can go to their website.

DMC

EnteroLab www.enterolab.com
Specialized Laboratory Analysis for Optimum Intestinal and Overall Health
Kenneth D. Fine, M.D.
Medical Director
10851 Ferguson Rd., Suite B Dallas, Texas 75228
email: [email protected]

Final Laboratory Report

Date: 7-2-2003
Name: Daniel McBrayer

Gluten Sensitivity Stool Test
Fecal Antigliadin IgA 23 Units (Normal Range <10 Units*)

Stool Test for Autoimmune Reaction to Tissue Transglutaminase
Fecal Antitissue Transglutaminase IgA 15 Units (Normal Range <10 Units)

Stool Test for Small Intestinal Malabsorption
Microscopic Fecal Fat Score: 38 Units (Normal Range < 300 Units)

Stool Test for Milk Sensitivity
Fecal anti-casein IgA antibody 19 Units (Normal Range <10 Units)

Gene Test for Gluten Sensitivity
Molecular analysis: HLA-DQB1*0201, 0602

Serologic equivalent: HLA-DQ 2,1 (Subtype 2,6)

Interpretation: Analysis of this stool sample indicates you have dietary
gluten sensitivity, resulting in an associated autoimmune reaction to the
human enzyme tissue transglutaminase, but no small intestinal
malabsorption/damage. You also have antibodies to the main cow's milk
protein, casein, and hence, you are immunologically sensitive to foods
containing cow's milk.

HLA gene analysis reveals that you have the main gene that predisposes to
gluten sensitivity and celiac sprue (HLA-DQ2). This genotype also can
predispose to microscopic colitis and other autoimmune syndromes.

For optimal health and prevention of small intestinal damage, osteoporosis,
damage to other tissues (like nerves, joints, pancreas, skin, liver, among
others), and malnutrition, recommend a strict gluten free diet and
re-testing in one year to insure this reaction is lessening. If you are
experiencing any symptoms, these may resolve following a gluten free diet.
Since antibodies to cow's milk are found with a greater frequency in gluten
sensitive individuals and people with certain autoimmune diseases, removal
of these foods from your diet may benefit you directly, as well as add to
the benefits of a gluten-free diet.

As gluten sensitivity is a genetic syndrome, you may want to have your
relatives screened as well.

Analysis performed by: Frederick Ogunji, PhD.
Interpretation by: Kenneth D. Fine, M.D.

Posted by lymiecanuck on :

This looks good. I know about the testing but low on funds cause everything costs so much. I know the regular tests are inaccurate, but since I am so far gone, thought it might show up, cause most likely advanced.

How is the diet going? I find it hard as everything has so much.

Have done some research on gf diet and lots of stuff to learn and cook by scratch or diet gets very boring.

Like learning a new language.

good luck
Lymiecanuck

Posted by dmcbrayer (Member # 5296) on :

quote:
Originally posted by lymiecanuck:
How is the diet going? I find it hard as everything has so much.

The new diet was a nightmare at first, because I practically lived on gluten, but overtime, I have learned to substitute it for other grains like whole grain sorghum, millet, corn, brown rice, teff, and amaranth.

DMC

Posted by frenchbraid (Member # 4225) on :

I have to mention again that if you are a celiac patient, you need to stay clear of ANY grains or you will NEVER recover. Just eliminating wheat will not cure the problem. You really need to look into the SCD.

If you follow a CF diet, you will remain a celiac for life. You really need to look at the big picture and get to the root of the problem and let your gut heal. Any grain will stir up problems.

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Stay positive. Smile. People care.

Posted by breathwork (Member # 567) on :

For those of you who are bread junkies, as I am, and hate leaving it off the menu, I have a suggestion..

Chebe Bread.

It's made from mantioc root from Brazil and I love it. Most GF breads are nasty, dry, yucky..This stuff is terrific in my opinion, and the kids love it too!

Check it out at....
http://www.chebe.com

Posted by Kerryblue (Member # 4077) on :

MY daughter had it yrs. back. ALso 5 yr. leg braces, prob. with ligaments,femoral inversions,knees. Now I am wodering if had before.

Loved horses,farms,ranches. Did have few weirs rashed alot of throat pro. young. WOndering if picked up equine lyme yrs back. Before my deer encounter.
I Was healthy child for most part. Just one side me always funny & class clown I guess.Other side very sensitive to others at young age. Always for underdog.

No other real illnesses. Both my kids had yrs.of illnesses. More I read have some questions, they will not be tested, scared.

Seeing active fun lving person go to a BLOB.

Lots we need to leatn yet, it appears..

Good Luck, Hugggss