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» LymeNet Flash » Questions and Discussion » Medical Questions » ROLL CALL of those with gluten intolerance and or celiac and lyme

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Author Topic: ROLL CALL of those with gluten intolerance and or celiac and lyme
Vanilla
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It seems like a lot of people with Lyme disease including myself are gluten intolerant.

Is there any sort of connection or not?

I know gluten is hard on the spleen.

Vanilla

[ 29. May 2007, 12:55 PM: Message edited by: Vanilla ]

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Lymetoo
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I think Lyme can cause the gluten intolerance. I blame the lyme for it in my case!!!

I was on the www.celiac.com board for a few months when I was dxd with gluten intolerance and since that time SEVERAL posters have found out they also have Lyme!!

That convinced me there's a connection. Others have traced it back to a viral cause.

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

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Vanilla
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Before I was diagnosed for Lyme but some time after I found a bulls eye rash with horrible flu symptoms and anxiety and panic attacks for 5 months straight I was put in the hospital with Colitis.

I figured out on my own with no help from my lame Kaiser gastro duck that I was gluten intolerant.

I think you are right about gluten intolerance being lyme related but I also know it runs in my family but I have suspicions my Grandmother had lyme and passed it on to all of us besides the tick bites I have received.

I wonder how many people with LD on this board are gluten intolerant.

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bettyg
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i just found out 4-06 that i'm gluten intolerant as well as case-in intolerant: cow's milk, cheeses, egg whites, and garlic!

i'm sure i've had these for 30 years; chronic lyme for 37 yrs.

also had diabetes 2, NO INSULINE for 3.5 years...


vanilla, how about changing your title by clicking on PENCIL on right side of your name:

ROLL CALL of those with gluten/celiac and lyme?
**********************************************

i'm guessing 50% plus..... [confused]

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breathwork
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well, add me to the list with gluten intollerance..
I was diagnosed with Celiac Disease two years ago...

I was diagnosed with lyme in 1998.

There is a genetic component to Celiac Disease which can be activated by severe stress, trauma or infection. I assume that lyme and babesia were my triggers for the Celiac.

It runs in my family.

Carol Ann

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Tori
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My duck plans on testing me in a month for CD when he retests for Lyme...moron. He thinks he can test to see if I am cured of Lyme. [Roll Eyes] He has the proof that I am NOT cured right in front of him....me! [Mad]
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sixgoofykids
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I don't think there's a link between celiac disease and Lyme, other than the fact that Lyme can be the trigger that sets off the genetic predisposition to celiac.

I do, however, think gluten intolerance can be caused by Lyme. I am gluten intolerant, but not celiac.

My Lyme symptoms present more like celiac than Lyme -- weight loss, malabsorption, fatigue, brain fog, gluten sensitivity ... my GI and I were both surprised my celiac tests were negative.

I spent a lot of time on the celiac board, and it was there I learned about Lyme from other non-celiac gluten intolerants ... so far, about 7 of us have been diagnosed with Lyme, but I see many more people there who seem to have it, and I get asked questions about it almost daily.

I think gluten is difficult to digest and is hard on anyone who eats it. I think that since those of us with Lyme are struggling anyway, that we tend to feel better if our digestive systems don't have to work so hard ... that energy can be used elsewhere.

Gluten intolerance is kind of like smoking. A smoker quits, starts healing, then if he tries to smoke, one cigarette makes him ill. That's how I've become with gluten, a smalll amount will make me feel sick, whereas before my body dealt with it. I saw a lot of improvement in my general health when I went gluten-free.

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

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Marnie
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Yes. Several factors are kicking in:

We need ENZYMES to digest foods. These help break apart foods in order for us to absorb the tiny nutrients in them...vitamins, minerals, amino acids.

In order to MAKE enzymes and to control them (activate or INACTIVATE), several nutrients have to be available (Mg is one critical nutrient).

Mg levels dive for protective reasons at the outset of lyme. It goes right into general circulation from INTRACELLULAR storage.

We don't have enough stores fast enough. Amazing that our liver stores (HUGE number of mitochondria - cell powerhouses - in liver cells with HUGE amts of Mg-ATP there) can't/doesn't help out.

It appears liver functioning is impacted very quickly. This is not apparent by testing liver enzyme levels, but IS apparent on a liver ultrasound...and now via MRIs which can show a "fatty" liver.

Think about WHY the body doesn't want gluten broken down.

Research what gluten is! Into your search engine, simply type in the word "gluten". Find the definition.

Now...keep in mind Bb's cell wall is lipoproteins and it absolutely must have glucose too.

See the implications?

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Vanilla
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Thank you Marnie because what you said in your post makes complete sense.

Also I was having liver problems. It was not showing up in my liver panels but my acupuncturist and also my Tibetan doctor both noticed it when they took my pulses and both of them were concerned with my liver.

Since then my Tibetan doctor has given me herbs for inflammation and to support my liver and my acupuncturist treated my liver for many weeks with needles. My liver is now much better!

I also agree with some of the posts that gluten is perhaps not a good thing for any humans to be eating.

I use to cheat and eat some here and there until I found out that it can stay in your system and fester.

I am now very careful about not eating gluten and I must say there are some gluten free cooking blogs that make life after gluten look just as delicious as before.

Now that I eat Nut-Thins and a good brand of brown rice pasta that I found (I still miss garlic bread) I am a happy camper.

I noticed someone else post in this thread that they gave up garlic. My Tibetan doctor has me avoid garlic too. I was eating large amounts of it raw before and now that I gave it up my yeast situation is actually better then it was and I feel better. I think garlic can give you weird die-off symptoms to. He also wants me to avoid all cow dairy but good quality plain yogurt. I am allowed to eat goat and sheep cheeses.

I think we also need to remind others that just like Lyme disease you can be gluten intolerant and not test positive for it. That is what happened in my case. Maybe I did not get the right tests done (I have had 2) but at this point I already know I am gluten intolerant and that is enough for me. I am tired of wasting out of pocket money on lame lab tests that make my doctor and the lab rich.

[ 30. May 2007, 02:04 AM: Message edited by: Vanilla ]

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Parisa
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My husband tested gluten sensitive through enterolab.
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Vanilla
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I remember hearing that in Italy the number of kids who have gluten intolerance is very high so they test them all at a very young age.
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Roxanne
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About a year before my full blown Lyme symptoms began I developed gluten intolerance. I was eventually tested for Celiac/Spru but I don't seem to have that. Nevertheless I cannot tolerate gluten. I really think this was my first Lyme symptom because I was always able to eat wheat my whole life up until that point.

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GRW

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clpgotlyme
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I have Celiac disease and Lyme. My Celiac symptoms started in childhood. Tick bite was more recent.
Cindy

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Cindy

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dlp252
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Yes, I am gluten/casein intolerant (confimed by Enterolab).

I have a celiac gene, but do not know for sure if I have celiac because when I was tested I had already been gluten free for several months.

In my case, I think the intolerance is made worse by the lyme (which I just found out about), but I think I will always have to be careful about eating too much.

Now, casein...I'm hoping THAT is just because of the lyme and that SOMEDAY I will be able to eat yogurt or cheese again. [lick]

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dibark
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I'm fairly new to this site (this being my first post), and I have found many of the discussion threads very informative. This topic was of interest to me, because I was diagnosed with Celiac Disease 11 years ago (following the birth of my 3rd child).

In doing a lot of research on Celiac, I've learned that Celiac is often triggered by trauma or stress. I would say child birth is traumatic to the body, so can certainly understand this, but I was always curious as to why I didn't get Celiac with my first two children. Apparently Celiac is linked to a particular gene in the body - why it goes hay wire for some people, I've yet to learn more about.

I was diagnosed with Lyme disease in January 2007 after getting the million dollar work up to find out what was wrong with me and being told that I'm stressed out and what I'm experiencing are panic attacks and that it's all in my head. I can only describe my health as a slow decline for years, until November 2006 when my health plummeted.

I never saw a tick or a rash, so am not 100% sure when I became infected with Lyme, but the thought is probably 5+ years ago.

However, in reading these posts, I'd be curious if I've had the Lyme longer - back to when I was diagnosed with Celiac 11 years ago. Because since the Celiac diagnosis things just haven't been right for me health wise since.

I thought dealing with Celiac Disease was difficult (as I was very ill at the time of diagnosis), but compared to Lyme, that was a piece of cake.

I feel so house bound anymore and so afraid all the time. My doctor keeps telling me Chronic Lyme is curable and that over time that I'll start having more good days that last longer, but it'll take time.

After starting my 6 month of meds, I'm starting to have some good days that last longer (which is exciting). These relapses are very challenging though. I guess it's one day at a time.

--Dibark

quote:
Originally posted by Vanilla:
It seems like a lot of people with Lyme disease including myself are gluten intolerant.

Is there any sort of connection or not?

I know gluten is hard on the spleen.

Vanilla


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Lymetoo
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Welcome Dibark!! Glad you found us!!!

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

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sixgoofykids
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Vanilla, don't you think the celiac rate might be high because they're better at diagnosing? Here the average time for celiac diagnosis is 11 years after illness ... but there they are screening everyone.

I'd bet our rate would be as high if we did that. Maybe we would see as many antacid, etc. commercials and products either.

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Vanilla
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Dibark I hope you have many more good days and welcome to the board.

6goofykids I think you are right about that one. It must also be tough for those kids with gluten intolerance living in Italy with pasta every where they look.

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Littlesprout
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I have been on the gluten free diet for 2 yrs. I have glaidin antibioites but a clean colon biopsy (he took 20) I also have the DQ1 gene ( do a search on Dr Fine and DQ1)

It is a pain in the butt diet but I think it helps the neuro/balance problems

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clairenotes
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I think lyme is behind my gluten intolerance. It is lessoning over time with treatment, but still too early to know for sure.

Claire

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