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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Low Dose Allergen Immunotherapy
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17 posts in this topic

I've just started LDA (Low Dose Allergen) Immunotherapy--I had my first shot on 12/22 and am just about done with the 3 weeks of careful post-shot dieting. Besides having gluten intolerance, I have many food allergies and this, I understand, is the closest thing to a cure for allergies. Anybody else doing it, and if so, how are you coming along--what differences are you noticing?

Paula

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My mom was doing it in the 1970's because she couldn't get pregnant. (I personally think it was the gluten intolerance but she's still kind of in denial about that.) She was injecting herself with tree pollens, molds, etc. while she was pregnant with me and now I'm allergic to all those things and everything related, like profillins in fruits, etc. I don't know if that's why or if I just inherited it, but it seems related. I've been curious about this treatment ever since I learned this news...what exactly do they put in those shots? Was it materno-fetal allergen transfer?

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My understanding is that it only works on true allergies--and celiac/gluten intolerance is not an allergy at all but an autoimmune disorder, which works in a totally different way.

Studies have shown that it takes as little as 1/16 of a slice of bread to cause visible damage to the intestines--often without a single symptom being felt.

SO I'd be skeptical about this immunotherapy working; in fact, I'd worry that it could do harm.

On the other hand--well, you never know! Especially with the autoimmune system. So please keep us posted and let us know if this seems to work for you.

Will they be doing repeat bloodwork to monitor your antibody levels? Or are they just going by the symptoms you feel?

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You're right - it won't cure gluten intolerance. It is a treatment for allergies only (food, inhalants, molds, pollens, chemicals, etc.--I think there's 300 or more subtances/foods in the shots if I am recalling correctly). From what I understand, LDA is the closest thing to a cure for allergies that's out there. It helps your body build suppressor T-cells to your allergens so you will quit getting reactions when you eat something/inhale something that would normally cause a reaction.

I was worried too and scared that it may make things worse, but I have never heard of it making anybody worse, only better. Also--I have so many allergies that I'm too miserable not to try it; I don't want to live like I have been living the past 15 years for the next 15 years or more (probably less b/c I would probably shoot myself at some point because it's a miserable existence).

I will come back here and report on my progress, but it's a process and will take at least 6 shots (from what I am told) to start really feeling better. I will be getting an LDA shot every 2 months for the first 6 shots and my second shot is scheduled for 2/16. It won't be until at least January of 2010 when I hit my 6th shot. But, Nickie Dumke, a seasoned LDA patient said I might start noticing good changes sooner than that. We shall see (and I will come back and report). This therapy might be the answer I (and maybe others) have been searching for. I tried the neutralization drops/shots and didn't get anywhere with it.

Anybody wanting to know more about LDA can read about it at this link:

http://www.drshrader.com/lda_therapy.htm

and then also Nickie Dumke's website:

http://www.food-allergy.org/epd.html

Paula

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My mom was doing it in the 1970's because she couldn't get pregnant. (I personally think it was the gluten intolerance but she's still kind of in denial about that.) She was injecting herself with tree pollens, molds, etc. while she was pregnant with me and now I'm allergic to all those things and everything related, like profillins in fruits, etc. I don't know if that's why or if I just inherited it, but it seems related. I've been curious about this treatment ever since I learned this news...what exactly do they put in those shots? Was it materno-fetal allergen transfer?

Are you sure she was doing actual "LDA" because LDA didn't get going until 2002 and before that there was a similar therapy called EPD (Enzyme Potentiated Desensitization) which was developed 1960. For EPD, a person would get a shot which was of a cocktail of antigens (including foods, molds, chemicals, pollens, dust, etc.) in the tiniest of doses with the enzyme beta-glucuronidase every two months (and then later stretched out to every 3 months, every 6 months, once a year). They were not done at home and they were not done every week as are traditional allergy shots. Possibly she did traditional, weekly shots, where the antigen dose is much higher than in EPD or LDA.

From what I understand if your folks have allergies to various things like molds, pollens, cats, etc., its very likely you will have them too. I think with the traditional allergy shots they give you just enough antigen to try to turn off the reaction, so I am doubting that you experienced some kind of materno-fetal allergen transfer from the shots (but I'm not saying that I know for sure that that's not possible--it's just my hunch that that's probably not the case), but that also the gluten intolerance caused some of your food/chemical sensitivies (the chemical in fruit) like I know it did with me and a lot of others that come to this particular forum since it is a contributing factor to leaky gut.

Paula

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My understanding is that it only works on true allergies--and celiac/gluten intolerance is not an allergy at all but an autoimmune disorder, which works in a totally different way.

Studies have shown that it takes as little as 1/16 of a slice of bread to cause visible damage to the intestines--often without a single symptom being felt.

SO I'd be skeptical about this immunotherapy working; in fact, I'd worry that it could do harm.

On the other hand--well, you never know! Especially with the autoimmune system. So please keep us posted and let us know if this seems to work for you.

Will they be doing repeat bloodwork to monitor your antibody levels? Or are they just going by the symptoms you feel?

My doctor has recommended LDA therapy for me because I have autoimmune thyroid disease. I haven't been tested for celiac, but it is suspected I have it. And a search for LDA and celiac is what has led me to this forum. I just wanted to interject to this comment.

My understanding of LDA, as given to me by my doctor and a lot of the research he has shown me, is that LDA actually can and often does work on autoimmune diseases. As he describes it, autoimmune diseases are very much like allergies turned inward, against your own body. You body attacks itself because it no longer recognizes that part of you and thinks it is foreign and unwanted.

I'm not saying that it does work on celiac as I have absolutely no idea. But I wouldn't discount it based on celiac being autoimmune as opposed to allergy. I read recently that the FDA in the states is currently testing LDA on an autoimmune disease with some promising results. Granted, since I personally don't believe they really want to cure anything, just make more money selling their drugs, I doubt much will come of it. But I was glad to see that they are at least giving it a shot...no pun intended.

I'd be interested to see how the LDA works on people with celiac and I intend on doing some more research into it.

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My doctor has recommended LDA therapy for me because I have autoimmune thyroid disease. I haven't been tested for celiac, but it is suspected I have it. And a search for LDA and celiac is what has led me to this forum. I just wanted to interject to this comment.

My understanding of LDA, as given to me by my doctor and a lot of the research he has shown me, is that LDA actually can and often does work on autoimmune diseases. As he describes it, autoimmune diseases are very much like allergies turned inward, against your own body. You body attacks itself because it no longer recognizes that part of you and thinks it is foreign and unwanted.

I'm not saying that it does work on celiac as I have absolutely no idea. But I wouldn't discount it based on celiac being autoimmune as opposed to allergy. I read recently that the FDA in the states is currently testing LDA on an autoimmune disease with some promising results. Granted, since I personally don't believe they really want to cure anything, just make more money selling their drugs, I doubt much will come of it. But I was glad to see that they are at least giving it a shot...no pun intended.

I'd be interested to see how the LDA works on people with celiac and I intend on doing some more research into it.

That's cool that it works for autoimmune diseases-I've read that too--there's a comprehensive list of what conditions doctor's are using LDA for on Dr. Schrader's website (I listed the link in post above). Please keep me posted if you decide to go for it. If you don't have any food allergies, the diet part won't be nearly as difficult for you as it is for me, since food is my biggest problem it requires me to eat a special diet for 3 weeks post shot. Those that don't have food allergies only have to observe, I think, a 3 day diet around the shot (day before, day of and day after).

Paula

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Wow what an interesting thread. Thanks for the info. My mom didn't remember any specifics about what they were called or how she did them, so I didn't have much to go on. But what you described sounds plausible. She did say she was injecting herself, so maybe they gave her something to do at home. Not sure.

Obviously I probably just inherited her allergies, but there are so many things they gave pregnant women in the 60's & 70's that turned out to have negavite effects on their babies, and antibodies are known to cross the placenta...unborn babies have even been shown to make antibodies of their own from exposure to various things in the womb, so who knows for sure, but I keep it open as a possibility. It sure would explain a lot for me, I think.

Anyway, thanks again! :)

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I've just started LDA (Low Dose Allergen) Immunotherapy--I had my first shot on 12/22 and am just about done with the 3 weeks of careful post-shot dieting. Besides having gluten intolerance, I have many food allergies and this, I understand, is the closest thing to a cure for allergies. Anybody else doing it, and if so, how are you coming along--what differences are you noticing?

Paula

I have been receiving allergy shots for about 10 years now.....about once every 4-5 weeks for maintenance. They have helped tremendously for my sinus symptoms. I used to get sinus infections all the time and about 2 years into the shots, these stopped.

I still have trouble when the allergins are at high levels (I am allergic to mold, dust mites and tree stuff) but the severity is much less and no infections. I use no meds during allergy season.

Not sure how well they work on food allergies as I seem to only have intolerances for those. The shots are rarely a cure but some people get lucky and have 100% improvement. I would say mine are about 60-70% improvement......well worth the effort if you do not want to load up on meds.

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Wow what an interesting thread. Thanks for the info. My mom didn't remember any specifics about what they were called or how she did them, so I didn't have much to go on. But what you described sounds plausible. She did say she was injecting herself, so maybe they gave her something to do at home. Not sure.

Obviously I probably just inherited her allergies, but there are so many things they gave pregnant women in the 60's & 70's that turned out to have negavite effects on their babies, and antibodies are known to cross the placenta...unborn babies have even been shown to make antibodies of their own from exposure to various things in the womb, so who knows for sure, but I keep it open as a possibility. It sure would explain a lot for me, I think.

Anyway, thanks again! :)

Yeah, I did the home, inject self weekly treatment too--it's a different treatment from LDA.

I'm sorry--please pardon me for guessing about the cause of your allergies--half the time I am unsure of how I got my own! In my case, before I got allergies, I suffered from horrible anxiety for many years, took way too many rounds of antibiotics, drank too much alcohol to quell the anxiety (they didn't have good meds back then) and then eventually obtained candida (from the antibiotics and alcohol) and had a parasite, E. hytolitica (sp?). Plus my mom has some food allergies (which she ignores), so for me it could have been a combo of adrenal fatigue, the candida, and then maybe a little heredity thrown in. I have spent countless hours trying to figure out "how did this happen to me?" I'll probably never really know for sure which particular thing pushed me over the edge, so I am just chocking it up to all of the above.

Paula

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I have been receiving allergy shots for about 10 years now.....about once every 4-5 weeks for maintenance. They have helped tremendously for my sinus symptoms. I used to get sinus infections all the time and about 2 years into the shots, these stopped.

I still have trouble when the allergins are at high levels (I am allergic to mold, dust mites and tree stuff) but the severity is much less and no infections. I use no meds during allergy season.

Not sure how well they work on food allergies as I seem to only have intolerances for those. The shots are rarely a cure but some people get lucky and have 100% improvement. I would say mine are about 60-70% improvement......well worth the effort if you do not want to load up on meds.

My allergy doctor recently said to me before I switched from standard shots to LDA that the standard shots are more of a way to "control" allergies and that LDA is the "closest thing to a cure" for allergies. I didn't find that the shots (neutralization therapy) worked for my food allergies. Of course, I am a bad example of a neutralization patient because I didn't give it the best chance to succeed b/c I slacked off and waited four years before I had my neutralization doses retested (which was very bad on my part) so since my neutralization doses had changed in those years, I had been taking the wrong doses of antigens for God knows how long, which then didn't "turn off" my allergic reactions (I was supposed to be retested in two years). I heard from another person who does LDA and she said that neutralization shots worked well for her hayfever/pollen/mold allergies, but not so good for her food allergies, of which she was allergic to almost every food, so she switched to LDA and is living a far more comfortable life and in between shots she just forgets about it and has fun.

Paula

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My allergy doctor recently said to me before I switched from standard shots to LDA that the standard shots are more of a way to "control" allergies and that LDA is the "closest thing to a cure" for allergies. I didn't find that the shots (neutralization therapy) worked for my food allergies. Of course, I am a bad example of a neutralization patient because I didn't give it the best chance to succeed b/c I slacked off and waited four years before I had my neutralization doses retested (which was very bad on my part) so since my neutralization doses had changed in those years, I had been taking the wrong doses of antigens for God knows how long, which then didn't "turn off" my allergic reactions (I was supposed to be retested in two years). I heard from another person who does LDA and she said that neutralization shots worked well for her hayfever/pollen/mold allergies, but not so good for her food allergies, of which she was allergic to almost every food, so she switched to LDA and is living a far more comfortable life and in between shots she just forgets about it and has fun.

Paula

I would agree that most allergy shots would not be useful for food allergies....that's a different animal. As I don't have any food allergies, it would be interesting to see how this helps you. How nice it would be if they could turn off the autoimmune response!

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I would agree that most allergy shots would not be useful for food allergies....that's a different animal. As I don't have any food allergies, it would be interesting to see how this helps you. How nice it would be if they could turn off the autoimmune response!

Turning off the autoimmune response is exactly the goal of LDA. From what I understand, LDA therapy helps your body make suppressor t-cells to turn off t-helper cells that are misidentifying substances (chemicals, foods, pollens, molds, danders, etc.) as foreign invaders and thereby setting off a chain of events that make the body sick.

I will keep posting here as I progress with the shots.

Paula

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Just wondering if you have had good results with the LDA... Did you continue with it? What improved and what didn't.

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Just wondering if you have had good results with the LDA... Did you continue with it? What improved and what didn't.

Just a FYI - looks like this poster hasn't been on the forum since 2009

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I have the same big list of ever-growing food allergies/sensitivities. If LDA therapy is supposed to be so good, then why isn't it used more and making a huge sensation? Why do I have to go to outdated-looking site owned by some doctor who has profits to be made whether or not the therapy is truly successful.

 

Does anyone know more about this? Does anyone know of high quality studies and reports on this?

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I have the same big list of ever-growing food allergies/sensitivities. If LDA therapy is supposed to be so good, then why isn't it used more and making a huge sensation? Why do I have to go to outdated-looking site owned by some doctor who has profits to be made whether or not the therapy is truly successful. Does anyone know more about this? Does anyone know of high quality studies and reports on this?

The original poster hasn't been on here for at least 4 years. Probably won't get an answer from her.

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