posted
***Sorry to the Neuro Lyme folks who couldn't read this***
I have not yet been diagnosed with LD yet (the 10 doctor's I've been to all seem to think I'm imagining my symptoms since the bloodwork keeps coming back negative).
I was bitten a year ago, got the EM Rash, a 105 fever and in 2 months I lost 20 lbs. I'm at 118 lbs. currently and unable to gain any more weight back.
Since being bitten, I've been diagnosed as having a Gluten Intolerance. Celiac Disease is inherited and nobody else in my family has it so I'm not sure how I developed it, the only thing I can think of is that its another thing to add to my list of symptoms.
Anyone else find they had to remove gluten from their diet after a LD diagnosis?
[ 29. July 2007, 01:54 AM: Message edited by: NwYrkGrrl ]
Posts: 7 | From NY | Registered: Jul 2007
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northstar
Frequent Contributor (1K+ posts)
Member # 7911
posted
Yes, I would say there are many many with gluten intolerance, and had never had a problem before.
I would find a llmd as soon as possible if you want an accurate diagnosis.
Post on "seeking a doctor" section for your geographical area. Most people travel a quite a ways, as there are not many. You can see the other posts about how far to look.
Also, click on the link on the left of this page for "support groups", and try to find contacts in your state, and nearby states.
Northstar
Posts: 1331 | From hither and yonder | Registered: Sep 2005
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posted
I think there are at least 10 people on this board with celiac and lyme.
I fully believe that Lyme disease CAUSED my celiac disease. Many on www.celiac.com say an infection or virus seems to have triggered their celiac problems.
Do a search here by clicking on the little word "search" in the upper portion of this page. You will find many discussions on this.
Please find an LLMD and get tested through Igenex Labs in CA. www.igenex.com
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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tailz
Unregistered
posted
I only tested positive for an egg allergy, but I was not able to get my weight up until I removed all grains from my diet. I dropped to 88 emaciated pounds, and still, docs did NOTHING to help me.
You have at the very least Lyme, but don't turn your back on the handful of coinfections you are likely to have, too.
I have no doubt that my gluten problems were due to infection. The best part was one of my docs put me on steroids in the middle of a Lyme attack (of all things!) I really shouldn't even be here today.
Lymetoo actually found me on the Celiac forum and helped me figure out I had Lyme. In fact, I was so sure I had Lyme, I went to a support group before I got my result.
Hope you feel better soon and keep us posted!
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bettyg
Unregistered
posted
welcome NYG,
now, you have met 3 of us with gluten intolerance on here: tutu, tailz, and me.
i've had chronic lyme 37.5 yrs; 34 yrs. misdiagnosed like tutu above.
plus being a diabetes 2 patient 6 months prior to my correct lyme dx!
my mom has been 16 yrs. at that time so she wasn't the carrier; my dad was; and he TOO NEVER knew it nor did he know he had lyme undiagnosed for 80 years plus!
how to view PMs, go to top left above the posts to HELLO NYG....; they are below there when it's flashing!
i sent you a private message, PM, with my 60 pages newbie links, advise, symptoms, tests by IGENEX & VERY DETAILED...so read them; disability, much more, and
treepatrol's archive link over 1000+ links of good info.
you've come to the right place for education, support, and help in finding a LLMD, lyme literate md.
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Foggy
Frequent Contributor (1K+ posts)
Member # 1584
posted
My MD said the blood tests are unreliable so I had an Endoscopy which didn't show signs.
Posts: 2451 | From Lyme Central | Registered: Aug 2001
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posted
Me! But, I'm pretty sure I had Celiac before Lyme. My Dr. has both also and said a large percentage of her Lyme patients are gluten intolerant. She asked me to make a folder of GF recipes for her to share with her patients. Cindy
-------------------- Cindy Posts: 227 | From VA | Registered: Sep 2005
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posted
I too, developed gluten intolerance as a result of Lyme.
Posts: 364 | From California | Registered: Sep 2005
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Vanilla
Unregistered
posted
I have LD and gluten intolerance. My gluten intolerance has not come up in a test yet but I know I have it. You can have it and not test positive for it just like lyme.
If you do a search you will find at least one other thread on this subject.
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posted
I am gluten intolerant, but not celiac. I seem to get GI symptoms when I flare ... this has happened over the years prior to knowing I had Lyme.
Now that my Lyme is being treated, I am less sensitive to gluten, but avoid it just the same as I avoid alcohol, sugar, and yeast.
Once a celiac, always a celiac, but I do not have celiac disease. I think that gluten is hard for everyone, and those of us with a lot of stress on our immune systems do better without it.
So, count me in, another gluten intolerant with Lyme Disease.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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quote:Originally posted by Vanilla: You can have it and not test positive for it just like lyme.
Absolutely!!! I had the endoscopy in 1980 which came back negative. Thought I was in the clear, but had a wheat allergy.
Then in 2001 I tested positive on a saliva test....but THOUGHT I eliminated gluten with no positive results. ( I didn't get the concept!! )
Fast forward to July 2006 when the you know what hit the fan. Can no longer tolerate gluten whatsoever.
Everyone with Lyme needs to TRY THE DIET. Eliminate gluten COMPLETELY FOR AT LEAST 2 WEEKS and see how you feel. I could tell a huge difference in just one week!
PS...It may take way longer than 2 wks to get a good result to the diet.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Vanilla
Unregistered
posted
I agree that gluten is probably not that good for humans or lymies. I know many seem to have a strong attachment to it and do not give it up. I have a friend who the acupuncturist told her to stop eating it and her diet still has an excess of gluten from cookies to bagels to bread you name it if it is gluten she tosses it on down like there is no tomorrow. I heard one hitch hiker in Maui refer to it as "colon stuffers".
My acupuncturist said gluten is hard on the spleen and some other organ. I have also heard that if you are gluten intolerant and cheat that it stays in your stomach and festers so I have given up all gluten and am okay not eating it.
This blog has lots of good looking gluten free recipes:
posted
Yes, lyme disease caused gluten intolerance in me for sure. I am on a celiac diet now and can't get off of it without getting very ill within 3 to 4 days.
Posts: 293 | From healdsburg, ca , sonoma | Registered: Feb 2005
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