Allergy Shots For Gluten Intolerance?

[Black Sheep]

I went to a restaurant today I'd never been to. Although they're not a g.f. place, it's a small gourmet place where, when I told them I can't eat gluten, they assured me that everything is fresh, organic, and made from scratch, and they are willing to fix things however you want. Which is true, and it was great! Well, except for something left me with the same painful symptoms I've recently had after eating avocados, so I suspect either the fresh kiwi or strawberries, but that certainly wasn't their fault.

Anyway, the manager or owner, came over to our table to see how she could help me choose g.f. foods. She said that she can't have gluten either (didn't say whether she's celiac or intolerant, but I suspect intolerant because of what she said next). Then she said that she understands how it is, because she's allergic to "almost everything". Her diet had been so limited due to food allergies (and she has other allergies, too) in fact, that she said she has been going and having weekly allergy shots, so she can have all that food again. She jokingly (or maybe she wasn't joking) said that through the shots, she was slowly "poisoning" her body so it would become used to the allergens, and that I should try it.

Has anyone ever heard of an allergy treatment like this? I've heard of allergy shots, but I didn't know they were supposed to de-sensitize the body to allergens, or whatever. And certainly not for gluten!

[kayo]

Yes, sadly I have. I had horrible seasonal allergies as a kid and was allergic to anything with fur, feathers or foliage. I was dragged to the allergist every week for a shot or two of the stuff I was allergic to in order to build up resistance. Honestly, I don't think it worked at all. My mother still goes. This means she's been going for 20+ years and she still has seasonal allergies. Some of my seasonal and animal allergies went away but I credit age not allergy shots for that.

This type of allergy exposure treatment would not work for celiac because a celiac has an auto-immune reaction to gluten, not a classic allergy reaction (sneezing, coughing, etc.) unless they are also allergic to wheat, barley, rye or oats.

[Black Sheep]

This type of allergy exposure treatment would not work for celiac because a celiac has an auto-immune reaction to gluten, not a classic allergy reaction (sneezing, coughing, etc.) unless they are also allergic to wheat, barley, rye or oats.

That's I'm thinking this woman must be more inclined toward a wheat or other grain allergy, as opposed to celiac. It seems that if she were truly celiac, she wouldn't even have gluten in her kitchen. And although she's not the chef, she is the one who makes the seafood chowder, and she said I couldn't have that because she thickens it with flour.

O.k. I think I'm still a little confused on one point, however. I know that celiac is an auto-immune thing, but is gluten intolerance, also? Or is gluten intolerance more of an allergy?

[mushroom]

We keep going round and round on this issue here on the forum. Celiac vs. gluten intolerance. Neither of them are allergies. Gluten intolerance seems to be basically the same as celiac except a gluten intolerant tests negative on the blood tests and the endoscopy. Gluten intolerants seem to be susceptible to the same complications of gluten consumption as celiacs. Some say that a gluten intolerant is just a celiac-in-waiting

[ravenwoodglass]

We keep going round and round on this issue here on the forum. Celiac vs. gluten intolerance. Neither of them are allergies. Gluten intolerance seems to be basically the same as celiac except a gluten intolerant tests negative on the blood tests and the endoscopy. Gluten intolerants seem to be susceptible to the same complications of gluten consumption as celiacs. Some say that a gluten intolerant is just a celiac-in-waiting

And/or the diffence is in where in the body the antibodies attack first. I consider them the same thing.

[sunnybabi1986]

Some say that a gluten intolerant is just a celiac-in-waiting

I like this, it makes sense!

[WheatChef]

If you could slowly grow your tolerance to gluten with a shot, you would have done it already during the decades you spent consuming it regularly. Not all cooks are bright apparently.

[dmetria]

Just my 2 cents... from someone new to all this but a total research geek... = )

But it seems like that lady may have an actual allergy to wheat/gluten. In everything I've read since I was diagnosed, they have stressed that there are some people that do have an allergy to wheat---which isn't the same thing as celiac disease because it's an autoimmune disease.

If she is "allergic", her reaction would be different because she doesn't have the same thing. I would say she probably gets rashes/whelps, etc but I also know some(many?) celiacs get a rash as well.

[Black Sheep]

And/or the diffence is in where in the body the antibodies attack first. I consider them the same thing.

So....where do the antibodies attack first, in someone who's gluten intolerant? Or where do they attack first in someone who has full-blown celiac?

This is fascinating, and I'm grateful for everyone's help here, thank you!

[Pac]

So....where do the antibodies attack first, in someone who's gluten intolerant? Or where do they attack first in someone who has full-blown celiac?

In full-blown celiac it's intestinal wall that gets attacked. In DH it's the skin. These are the only two tissues that can be "officialy" attacked by gluten-triggered antibodies. Other possible tissues include periferic nerves and CNS, kidney, liver, thyroid, pancreas, lungs, other parts of digestive system... (In me it is weins, nerves, connective tissue and maybe lungs and muscle. I have no proof that gluten ever caused villous atrophy or celiac antibodies in me.) IMHO gluten attacks the other tissues directly, not through malnutrition. At least in my body. I've read in one article that non-GI issues appear up to 10 years before villous atrophy. Maybe the body is anticipating future malnutrition?

The allergy shots are exactly what australians are testing now for celiac:

www.celiac.com/articles/21788/1/First-Ever-Celiac-Disease-Vaccine-Trials-Underway-in-Australia/Page1.html

[Black Sheep]

Ohmygosh. At 5 years old, I had a "mysterious" kidney infection that almost killed me. Then a few more throughout the next several years, though none as severe as the first. It left my kidneys scarred, and they never were able to figure out the cause of the infections. I'm also hypothyroid.

I'm sorry but--what's DH?

[mushroom]

DH is dermatitis herpetiformis, the skin manifestion of celiac disease.

[ravenwoodglass]

In full-blown celiac it's intestinal wall that gets attacked. In DH it's the skin. These are the only two tissues that can be "officialy" attacked by gluten-triggered antibodies. Other possible tissues include periferic nerves and CNS, kidney, liver, thyroid, pancreas, lungs, other parts of digestive system... (In me it is weins, nerves, connective tissue and maybe lungs and muscle. I have no proof that gluten ever caused villous atrophy or celiac antibodies in me.) IMHO gluten attacks the other tissues directly, not through malnutrition. At least in my body. I've read in one article that non-GI issues appear up to 10 years before villous atrophy. Maybe the body is anticipating future malnutrition?

The allergy shots are exactly what australians are testing now for celiac:

www.celiac.com/articles/21788/1/First-Ever-Celiac-Disease-Vaccine-Trials-Underway-in-Australia/Page1.html

One other organ that has been proven to be compromised and is at times attacked first is the brain. I had both DH and gluten ataxia for years before gut problems got to the point where they were seen as 'abnormal'. With gluten ataxia the antibodies attack the brain directly leaving lesions that can be found on an MRI that appear to be similiar to MS lesions. Too bad most neurologists in the US don't know that. Would have saved me years of suffering.

[Black Sheep]

Great, so that's what's wrong with my brain. Seriously, My memory's gone to the dogs, I'm pretty much always in a brain fog, and I can't concentrate. Although I was never what you'd call a genius, I used to have very good memory, could quickly and easily memorize things I'd read, was fairly quick-witted and had no trouble concentrating. But little by little, over time, my brain seems to have turned to mush. Especially the last couple of years.

So did you heal from this after going g.f.?

Oh and another thing--I think I read something about ataxia causing balance problems? Sometimes I reel like a drunk!

[Korwyn]

So....where do the antibodies attack first, in someone who's gluten intolerant? Or where do they attack first in someone who has full-blown celiac?

This is fascinating, and I'm grateful for everyone's help here, thank you!

Dr. Young's research has shown some linkages that lead to the possibility that the anti-body/inflammatory reaction can actually show up in any variety of organs and/or tissue. Also in Europe they are finding the neurological manifestations may actually be more common than the 'classic' celiac disease presentation.

[ravenwoodglass]

Great, so that's what's wrong with my brain. Seriously, My memory's gone to the dogs, I'm pretty much always in a brain fog, and I can't concentrate. Although I was never what you'd call a genius, I used to have very good memory, could quickly and easily memorize things I'd read, was fairly quick-witted and had no trouble concentrating. But little by little, over time, my brain seems to have turned to mush. Especially the last couple of years.

So did you heal from this after going g.f.?

Oh and another thing--I think I read something about ataxia causing balance problems? Sometimes I reel like a drunk!

Yes ataxia does affect balance. I got so bad by diagnosis that I had progressed from walking next to walls and using a cane to the point where we were preparing my house for me to be in a wheelchair in another 6 months or so. By six months gluten free I was able to get rid of my canes and actually ran up my stairs. Within 2 years gluten-free I had regained the reflexes in my legs. I had lost those by the age of 10. I had then been ataxic for 5 years. I was thought to just be 'clumsy'.

As far as brain function goes. Well when I was young my IQ tested out at 168. By the time I was diagnosed I could no longer retain anything I read. I had times that I got into my car and couldn't figure out what to do with the key. I couldn't tell you what an object was or who was president and had a hard time getting what I was thinking out of my mouth. I went from being selfconfident and able to hold my own in any conversation to someone who sat in the corner and barely talked to anyone. I have come a long way since then. I am still not and never likely will be the same person mentally but I did recover a great deal. I did have brain impact for over 30 years before I was diagnosed so I am happy with the healing I have had. There are lots of others who have healed fully but for me the damage was just too severe.

Do not be surprised if a lot of the mental issues you are having resolve on the diet. Sublingual B12 will help the healing.

[Black Sheep]

Thank you so much, Ravenwood! This gives me hope. Even if I never get back the balance and mental acuity I once had, I'd be thrilled to have as healing as you have. I'll be 48 in a couple of months, so I guess I have a lot of years of poisoning working against me. I'm just so tired of being such a dingbat. I must come off as having the i.q. of an eggplant!

So, if you don't mind me asking--and if you do, please just ignore the question, but--did you have an MRI and found that there were lesions on your brain, like you were describing earlier?

Oh btw, I've been taking sublingual B-12 for years, due to low stomach acid (hypochloridia), which in turn had caused pernicious anemia. After a few years on it my former doc said I probably didn't need it anymore, but when I started with my current doc, about a year ago, she said I should keep taking it. Never hurts to err on the side of caution, I guess.

[ravenwoodglass]

Thank you so much, Ravenwood! This gives me hope. Even if I never get back the balance and mental acuity I once had, I'd be thrilled to have as healing as you have. I'll be 48 in a couple of months, so I guess I have a lot of years of poisoning working against me. I'm just so tired of being such a dingbat. I must come off as having the i.q. of an eggplant!

So, if you don't mind me asking--and if you do, please just ignore the question, but--did you have an MRI and found that there were lesions on your brain, like you were describing earlier?

Oh btw, I've been taking sublingual B-12 for years, due to low stomach acid (hypochloridia), which in turn had caused pernicious anemia. After a few years on it my former doc said I probably didn't need it anymore, but when I started with my current doc, about a year ago, she said I should keep taking it. Never hurts to err on the side of caution, I guess.

Yes I did and they found 5 lesions. I was thought to have MS because of that but when they did the spinal tap for final diagnosis no debris from the lesions was found so the neuro just shrugged his shoulders and said 'well lots of folks have those they don't mean anything'. The lesions are UBO's or unidentified bright objects. The look like blobs of white light on an MRI.

He is the only doctor I would like to sue. It would be a few more years after that before I was diagnosed. They were not good years to put it mildly. When my neuro symptoms resolved on the diet I started doing research and discovered that in other countries those lesions are diagnostic of celiac disease.

[Black Sheep]

I'm sitting here stunned. That is absolutely incredible. Thank you so much for sharing that, as so much makes sense now. I admire your strength and refusal to give up through all of that.

[stef-the-kicking-cuty]

Yes, it definitely attacks the brain. In 2003, when I was still in Germany, the last month before I moved to the US, I had already packed up my stuff and moved into my best friend's appartment for a while. She actually saw me running into a wall at one point and was like "What's going on, are you alright?" I was so relieved, that there actually was somebody who witnessed this, because the doctor's had already written me off to be a hypocondriac. And after all it didn't happen all the time. I also had pain in my forehead on the left side and on my left side in my tummy at the same time. It kind of flared up every 4 or 5 minutes over the course of like 7 years. Nobody ever believed me. The last few months before I got diagnose, I had severe pains in my forhead bone and memory troubles AND balance issues. I was diagnosed about 7 months later in the US. And whenever I get glutenized by accident, I have severe neurological and muscle problems to the point, where I can't walk anymore.

My own mother has a myriad of physical problems, including problems with her brain and it's gotten so bad. She had several tests, who were all negative. I've told her, she could still have it. But she religiously believes the doctor. She said, she doesn't have problems, even though I know, she does. By the way... Alzheimers has been linked to gluten, too.

Everything was very interesting, thanks for sharing.

Stef

[ravenwoodglass]

I'm sitting here stunned. That is absolutely incredible. Thank you so much for sharing that, as so much makes sense now. I admire your strength and refusal to give up through all of that.

Thanks. I don't think I would have made it to diagnosis if I didn't have kids.

My before sleep mantra for a long time was 'Tommorrow will be better' and one day it was. There are so many like me. One thing this board has shown me is that I am certainly far from alone. Unfortunately.

[Skippy]

Hi everyone, I am a 20 year old male who for the last year or so I have been experiencing a lot of weird symptoms that only appear to be getting worse as time progresses. My symptoms for at least 1-2 years include this constant feeling of fatigue and lethargy almost every single day. On top of this I have also been experiencing diarrhea after meals almost every day. In addition, for the last 8 months or so Ive been getting this popping/crackling noise in both my ears every single time i swallow, every single day.

What bothers me the most is I don't feel like the person i used to, I feel like I am constantly having trouble coming up with words to say or things to remember or even trying to memorize my homework. When I'm in class I feel like everything the teacher is saying is just going right through my head.

I've seen a couple doctors and have gotten my blood tested and we are now coming to the conclusion that it is probably allergies, I am currently taking nasal steroids a long with a daily allergy pill called singular. For the most part, these don't help at all. I stumbled across this website and after reading all of you're posts, I'm really starting to think I might be allergic to gluten. Is this something that would make sense based on my symptoms?

Any and all help is greatly appreciated.

Thanks.

[ravenwoodglass]

Hi everyone, I am a 20 year old male who for the last year or so I have been experiencing a lot of weird symptoms that only appear to be getting worse as time progresses. My symptoms for at least 1-2 years include this constant feeling of fatigue and lethargy almost every single day. On top of this I have also been experiencing diarrhea after meals almost every day. In addition, for the last 8 months or so Ive been getting this popping/crackling noise in both my ears every single time i swallow, every single day.

What bothers me the most is I don't feel like the person i used to, I feel like I am constantly having trouble coming up with words to say or things to remember or even trying to memorize my homework. When I'm in class I feel like everything the teacher is saying is just going right through my head.

I've seen a couple doctors and have gotten my blood tested and we are now coming to the conclusion that it is probably allergies, I am currently taking nasal steroids a long with a daily allergy pill called singular. For the most part, these don't help at all. I stumbled across this website and after reading all of you're posts, I'm really starting to think I might be allergic to gluten. Is this something that would make sense based on my symptoms?

Any and all help is greatly appreciated.

Thanks.

It does sound like you could be one of us. You should ask your doctor for a full celiac panel. If they are going to do an endo you need to stay on gluten until those tests are done. After testing is finished then give the diet a good strict try no matter what the results are.

[overnormal]

One other organ that has been proven to be compromised and is at times attacked first is the brain. I had both DH and gluten ataxia for years before gut problems got to the point where they were seen as 'abnormal'. With gluten ataxia the antibodies attack the brain directly leaving lesions that can be found on an MRI that appear to be similiar to MS lesions. Too bad most neurologists in the US don't know that. Would have saved me years of suffering.

Yes I had been dx'd with MS for 16 years. Within last 6 mons. found out it's celiac. Writing a book about it with my doctor. Amazing!

[ravenwoodglass]

Yes I had been dx'd with MS for 16 years. Within last 6 mons. found out it's celiac. Writing a book about it with my doctor. Amazing!

What a great thing to do. Hopefully lots of doctors and other medical professionals will read it. I have seen a great deal of improvement and I hope you do also.