Were you tested for Celiac's Disease? I asked my LLMD if I should be, but I was told it was not necessary.
Do you have success with a gluten-free diet?
Posted by GiGi (Member # 259) on :
You may want to acquaint yourself with www.allergie-immun.de/English and you will be able to eat all the wheat you want after that therapy. There is also a thread going on the same subject. Many children are born with wheat/gluten/gliadin allergies, and all Lymies who have taken the test of AI so far have that problem and many more. Often the allergy is inherited.
Most medical doctors are not familiar with that type therapy.
Take care and good luck.
Posted by kam (Member # 3410) on :
GiGi...I was just thinking of you. I tried the web site you suggested and got an error message.
Tried typing it in also. I will try again later gator.
Posted by GiGi (Member # 259) on :
Try this one: www.allergie-immun.de and click on Englisch when you get to the website. Be sure you click through everything they link on the English text, because there is more than just the first page.
Hope you find it. It's worth its weight in gold.
Take care.
Posted by bettyg (Member # 6147) on :
hi gigi, thx for corrected link!!
could you go back to your 1st link and delete it or show the correction there? thanks for the good links you provide us xox
too late at night to comprehend ....
Posted by sixgoofykids (Member # 11141) on :
Leelee, what test did your LLMD give you if it wasn't the celiac test?
I was gluten intolerant, severely so, prior/during treatment. It's gone now. If it's truly celiac though, it's for life, so it's important to check it out.
Posted by Shosty (Member # 12232) on :
Gluten intolerance, allergy and celiac are all different things.
Testing for celiac will not be accurate if you have been off gluten (just in case, for anyone reading this). In order to have accurate tests, you have to be back on gluten for 6 months. If a doctor suggests an endoscopy and biopsy, which are the gold standard testing procedures for celiac, and you have been off gluten, say no!
It is possible that antibiotics are creating sensitivities/allergies to gluten, through the leaky gut syndrome, or some effect on the immune system. Or it could be the infection itself. It matters, because we need to decide whether to take the antibiotics, but there is no way to know, unfortunately.
Celiac is something you are born with and, as six goofy kids said, is permanent.
Posted by sixgoofykids (Member # 11141) on :
True, celiac is genetic, but it can be "dormant" until a certain stress on the system ... a stress like Lyme.
Posted by GiGi (Member # 259) on :
Just checking the study I received from AI: on that particular study of some 200 people, out of 6 celiac/sprue/gluten intolerance, 5 no longer had any problems, one had still some, after they finished the drop therapy. (anyone can order their study!) They work strictly on the electromagnetic patterns in the DNA correcting dysregulations.
Posted by Lymetoo (Member # 743) on :
Kind of a long story about testing. I had one that showed high gliadin levels too and had a negative biopsy in the 70's.
The biopsy was negative because I was NOT EATING WHEAT at the time of the test!!!
I'm NOT willing to eat the equivalent of 5 slices of bread per day for 90 days in order to have a valid test. No way.
I had a positive response to the diet within 10 days.
Be sure to avoid wheat, rye, barley and oats. Read labels like a hawk and get the list of NOT OK food items at www.celiac.com You'll be surprised what's on the list!!
Posted by Leelee (Member # 19112) on :
quote:Originally posted by sixgoofykids: Leelee, what test did your LLMD give you if it wasn't the celiac test?
I was gluten intolerant, severely so, prior/during treatment. It's gone now. If it's truly celiac though, it's for life, so it's important to check it out.
Hi sixgoofykids,
The test was the Expanded GI Panel from Diagnos-Techs. The result from Gliadin AB,SIgA was "42 Positive". The reference range was Positive: >15 U/ml.
I never even thought I was gluten sensitive and it came as quite a surprise to me, although the more I read the more the pieces fit.
For most of my 53 years I have been complaining of gas, flashes of nausea and unexpected urges to run to the bathroom due to loose stools. In the past few years the situation has become intolerable.
After reading so much helpful information about parasites on Lymenet I suspected that was causing my problem so I asked to be tested. I was tested twice and both times was negative. The Diagnost-Techs showed the wheat allergy as well as milk and soy allergies, although these do not shock me as I have a natural aversion to products containing both of those things.
I think I am a little troubled by my LLMD not wanting to test for Celiac's considering my history and the really high positive number.
To complicate matters, the LLMD I had this conversation with is actually the assistant LLMD in the practice and not the one who diagnosed me with Lyme, barts and babs this past spring.
I have an appointment with my regular LLMD at the end of July so I think I will pursue this further with him.
Do you or anyone else have any opinions or thoughts about any of this?
I am upset and feel like I have been dismissed -- just like I felt when going to a regular HMO doctor. It feels humiliating.
Posted by Keebler (Member # 12673) on :
I would just do the gluten free diet until you see the doctor at the end of July.
You will know by then if it is even beginning to help.
I had a neg Gluten result by DiagnosTechs, but my SigA was low, indicating that the neg may be a false neg.
I did the diet for just over a month with no difference and still no change once I went back to gluten.
I have since learned more about the significance of a depressed SigA level.
Just try the Gluten free diet. It may be worth it with your GI symptoms. I had no Gi symptoms.
~Kitty
Posted by Leelee (Member # 19112) on :
Thank you, kitty, for the advice.
I started the gluten-free diet today after going to the grocery and shopping in the "gluten free" aisle.
I don't think I will have too much trouble following it b/c I don't eat much, if any bread or pasta, etc. anyway. It seems like I will only need to make small adjustments and pay closer attention to food labels.
Tonight I am making lentil chili for dinner. It's a favorite of mine, but I don't think my husband likes it too much. Posted by kitty9309 (Member # 19945) on :
Good. Let us know how it goes.
My apologies to your husband. lol
Posted by HollyS (Member # 20550) on :
Just be sure to really read the labels. Gluten is hidden in many places you would not expect. Even some deli meat contains gluten. Some soy sauce of all things contain gluten.
I have GI issues and feel so much better on a gluten free diet. I am gluten and lactose intolerant though.
[ 06-27-2009, 03:03 AM: Message edited by: HollyS ]
Posted by Tracy9 (Member # 7521) on :
Hi, We also have a gluten free group on www.lymefriends.com that might be helpful to you as well.
Posted by cottonbrain (Member # 13769) on :
is it possible to have gluten sensitivities but not have digestive / bowel problems?
what is gliadin?
Posted by Leelee (Member # 19112) on :
quote:Originally posted by cottonbrain: is it possible to have gluten sensitivities but not have digestive / bowel problems?
what is gliadin?
Hi cottonbrain,
Gliadin is something (chemical, maybe?) found in wheat, rye, and other grains.
I am really new to this whole topic, having just found out I have a high sensitivity to it, but I think a person can have it and not have digestive/bowel problems.
From what I gather, gluten sensitivity can cause fatigue and some vitamin and mineral imbalances too.
Posted by kim812 (Member # 17644) on :
I also just received my testing back from Metamedix and my antibodies to gliadin were 45.8 where normal was 12.5
My doctor had also done the blood testing which was totally negative. I must also say I have none of the common symptoms of celiac or gluten intolerance.
He told me to go on the gluten free for a few weeks to see what would happen. Well nothing did since I really have no GI symptoms.I lasted about 9 days on it.
Went to my gastro doctor yesterday with both my blood and stool reports. He told me the blood is a very accurate test and the stool is not.
So I asked if I should have an endoscopy with biopsy and he told me in his opinion it was not necessary because of the blood results. I kind of insisted and he said okay.
So I am having the test done on July 16th. I have been back on wheat etc for a week now and I feel no different either way.
He had told me I would have noticed a difference almost immediately. It was very difficult for me to do the gluten free but I know in time I would have adapted to it. But I will know for certain after the test is done.
Yes gluten sensitivity can cause fatigue which is why I was tested in the first place.
Posted by Leelee (Member # 19112) on :
Best of luck to you kim812. Please let us know the results of your endoscopy.
It gets so confusing and frustrating doesn't it; getting test results and not knowing how much credibility to place on them.
I imagine you will have piece of mind after the biopsy, though. At least you will be able to rule in or rule out Celiac's disease as a cause of your fatigue.
Posted by jkmom (Member # 14004) on :
I am gluten intolerant and never felt that I had GI symptoms before I went gluten free. Since then, I have noticed my stomach isn't bloated any more, so I did have some GI effect.
When I have gluten, I am anxious, irritable, and tired all of the time. I still don't notice any stomach problems.
The first time I tried the gluten free diet, I didn't notice any difference when I tried it and when I went back to eating gluten. That time, I didn't worry about small amounts of gluten, but avoided obvious gluten, like bread, pasta, etc.
The second time I tried the gluten free diet, I was more aware of hidden gluten and was very strict. I could feel the difference by the first or second day.
Posted by kim812 (Member # 17644) on :
These tests are very confusing especially when my gastro doc said the stool test meant nothing... In a way I was happy cuz I thought I had found a cause for my lingering symptoms.
If going gluten free for the rest of my life would help me then I would do it in a second.
I looked back and was on the diet for 13 days and didn't notice anything. No drop in fatigue at all but maybe it takes longer. I don't know.
I will definately let you know how the test turns out. Won't know much until the biopsy is back on the 30th of July..
Did you have the blood test done? That is suppose to be very reliable if you are not sure either.
Posted by Shosty (Member # 12232) on :
You might want to check on the effect of being gluten free for a few weeks,on the accuracy of the biopsy. Many of us have been told that we needed to be back on gluten for a certain amount of time, before the biopsy.
Many GI docs don't pay any attention to these details, even if you raise the question with them.
My daughter had been off gluten for months, but they still did the biopsy. I raised the issue myself, not the doctor, who then said yes, it would be better if she could be back on gluten for 6 months. We did not think that making her sick again to get a diagnosis made any sense, however, so it was never redone.
There are many hidden ingredients containing gluten, dairy and soy.
We have mainly neuro symptoms from our sensitivities, including paresthesias (numbness and tingling), headache (daily, often in the back of the head), dizziness and fogginess.
Posted by lyme2health (Member # 19981) on :
Become a label reader. Lots of salad dressings, sauces, prepared foods have hidden gluten: maltodextrin, modified food starch, etc.
I have been gluten free 3 months now and the difference is amazing! I am not starving for nutrients all the time, even after a nutritious meal like I was before. I have so much more vitality. I don't care about having fewer choices of what to eat when I feel this good about what I do eat!
I don't know if the tick borne illnesses got me so hard because I'd been gluten intolerant for a long time and my immune system was trashed by leaking gut of celiac disease or if I developed gluten intolerance after lyme.
Posted by Leelee (Member # 19112) on :
lyme2health,
It has only been day four of my gluten-free diet and I feel so much better too.
It is interesting what you said in your last paragraph about TBD's and gluten intolerance. I have been wondering the same thing: if maybe the Lyme and cos. finally overwhelmed my body because I was already fighting gluten issues as well.
Posted by Rambler (Member # 18794) on :
Howdy, What is frustrating here is that there doesn't seem to be much agreement on how to accurately test for the problem.
I've had a blood test and an endoscopy, which were both negative. 2 docs both firmly believeing their tests were sufficient.
I am sensitive to wheat, but not other gluten bearing grains (according to food sensitivity testing).
Nobody knows anything for sure, it seems. We are all different and I think it boils down to what makes each of us feel something close to OK.
Frankly, I'm tired of all these damn tests and docs giving conflicting info. THEY DON'T KNOW!!! It boils down to opinion, again...
Do what feels best for your body, in particular.
Our bodies were not made to injest the crap that most people consider "food". I'd start there. Does it come in a package? Are there more than 5 ingredients? You probably don't want to eat it then.
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