Are Sublingual Immunotherapy Drops Safe?

[jasonD2]

i visited my doc today & the staff allergist gave me these immuno drops for my trip to france to take in the event that I accidentally ingest wheat. she said there is no gluten in the drops & they are safe for celiacs, but there is a wheat extract of some kind in there. Has anyone had problems with these drops? im a bit reluctant to take them and they also cost me $60

[Gemini]

i visited my doc today & the staff allergist gave me these immuno drops for my trip to france to take in the event that I accidentally ingest wheat. she said there is no gluten in the drops & they are safe for celiacs, but there is a wheat extract of some kind in there. Has anyone had problems with these drops? im a bit reluctant to take them and they also cost me $60

I would take them back for a refund, Jason. You do not have an allergy, you have an autoimmune disease which creates an intolerance so these drops are a waste of your money. If the allergist claims there is no gluten in the drops, then they must be distilled for her to make that claim because there is a wheat extract in them.

Sounds like your allergist's office are not well trained in Celiac Disease but they handle allergies, not intolerances. I just wouldn't take anything like that myself.

Don't sweat the trip and eating there so much. Trust me, if there is one group of people who know what's in their food, it's the French. I have never had a problem with French food in Europe myself so I think you'll do fine.

Hope you have a nice time in France and it all works out for you!

[jasonD2]

Yes im not comfortable taking them- this is a well respected integrative medical practice so im fairly confident that the allergist knew what she was talking about, but im skeptical of everything and everyone these days

The allergist already gave me a dose today and im feeling kinda weird now, not sure if its gluten induced or my usual hypochondria but im going to return them

[jasonD2]

i visited my doc for a follow up today- he works for a well respected integrative medical practice. anyway he recommended that I take sublingual immunotherapy drops with me when i go to france in case i get exposed to things im allergic to.

The staff allergist brought me the drops and put some under my tongue. she said there was a wheat extract in the drops but no gluten and that they are safe for celiacs. I am now a little worried that they are not safe but i cant imagine why they would give me something that would hurt me. has anyone tried these drops before?

[Egaeus]

Yes im not comfortable taking them- this is a well respected integrative medical practice so im fairly confident that the allergist knew what she was talking about, but im skeptical of everything and everyone these days

The allergist already gave me a dose today and im feeling kinda weird now, not sure if its gluten induced or my usual hypochondria but im going to return them

The fact that you're going to an "integrative medical practice" suggests that you're not being sufficiently skeptical.

The fact that you were given anything that is supposed to prevent a reaction to gluten if you have celiac disease suggests that you are being taken advantage of by an incompetent, though I'm sure nice and well-meaning, boob.

[flourgirl]

My first thought goes like this.......wheat is wheat is wheat.....how in the heck can they contain wheat and be gluten free??????? I think I would not use these drops until I knew absolutely without a doubt that they were safe. Maybe I'm wrong, but I would not just take their word for it.

[psawyer]

Please continue this discussion here and refrain from starting additional threads on the same topic.

[Gemini]

i visited my doc for a follow up today- he works for a well respected integrative medical practice. anyway he recommended that I take sublingual immunotherapy drops with me when i go to france in case i get exposed to things im allergic to.

The staff allergist brought me the drops and put some under my tongue. she said there was a wheat extract in the drops but no gluten and that they are safe for celiacs. I am now a little worried that they are not safe but i cant imagine why they would give me something that would hurt me. has anyone tried these drops before?

Jason,

Treatment for an allergy is entirely different than treatment for an intolerance. Any respectable allergist will not give any wheat containing solutions to anyone with celiac......period. With allergies, you can give small amounts of the offending agent, in a prepared solution like allergy shots, in the hopes of retraining your immune system to not react. This is not the case with celiac. Your body will always go on the attack when it senses gluten in your system.

There is a new allergy practice in NH which uses acupuncture like treatments to treat food and seasonal allergies. My doctor tried it and reported amazing results. It's a new way of treating allergies and they are having high success rates. The name of the practice is: Advanced Allergy Treatment Center of New England. The reason I am giving you their information is because they clearly state on their website they do NOT treat Celiac Disease.......different animal. They must have had a lot of calls from Celiacs thinking they could cure the problem so had to make this statement.

I think you should never take anything with wheat in it, even though your doctor is probably well meaning. Even my own allergist made remarks which led me to believe I know more about it than he does!

[jasonD2]

I cant imagine why a doctor i know and trust would want to harm me...especially one that is so intelligent. So is there a chance the drop i got early today reversed 2 months of being completely 100% gluten free? i am appalled that this is a possibility...getting potentially glutened by the person who is supposed to help me

[ravenwoodglass]

I cant imagine why a doctor i know and trust would want to harm me...especially one that is so intelligent. So is there a chance the drop i got early today reversed 2 months of being completely 100% gluten free? i am appalled that this is a possibility...getting potentially glutened by the person who is supposed to help me

Please don't take those drops. I doubt that they are going to 'reverse' all the healing you have already had but that doesn't mean you are not going to react to them. I had a very well respected naturopathic doctor, supposedly the best in NY who poisoned me with everything they gave me, we are talking hundreds of dollars for consultations and his special branded 'herbal supplements and tinctures'. When I confronted him with the fact that what he was giving me was not safe his reply was the amount of gluten was so small I couldn't be reacting to it. We know that it takes very little to keep or reactivate those antibodies but he chose to ignore that. I agree with the previous posters, you do not have a gluten allergy you have a gluten intolerance, they are two totally different things.

[flourgirl]

I agree with the above posts..and want to add....please don't assume that the trusted doctor purposely poisoned you. He gave you what he thought would help out of ignorance. Just because a doctor went to school and is a doctor does not make him omniscient. He is a human being like anyone, doesn't know everything and does indeed make mistakes. He has the choice of learning more about your condition ..... or not. You have to be in control of learning all you can, what you do to treat or not treat. We need the docs for guidance, yes, but the final decision is yours. You may want to discuss the differences between allergy and intolerance with him on your next visit. You'll know then if he's interested in learning more himself.....or if there is someone more knowledgable that he can refer you to.

Hopefully you did not have any bad effects from the drops, and that you can relax and enjoy your trip!!! After all, we have to live with this....and living is what you make it. Hopefully we can get beyond the diagnosis and just enjoy all we can.

[Gemini]

I agree with the above posts..and want to add....please don't assume that the trusted doctor purposely poisoned you. He gave you what he thought would help out of ignorance. Just because a doctor went to school and is a doctor does not make him omniscient. He is a human being like anyone, doesn't know everything and does indeed make mistakes. He has the choice of learning more about your condition ..... or not. You have to be in control of learning all you can, what you do to treat or not treat. We need the docs for guidance, yes, but the final decision is yours. You may want to discuss the differences between allergy and intolerance with him on your next visit. You'll know then if he's interested in learning more himself.....or if there is someone more knowledgable that he can refer you to.

Hopefully you did not have any bad effects from the drops, and that you can relax and enjoy your trip!!! After all, we have to live with this....and living is what you make it. Hopefully we can get beyond the diagnosis and just enjoy all we can.

This is excellent advice and the right way to look at this learning experience. I don't think most doctors, even the arrogant ones, intentionally set out to harm anyone. I have been amazed over the past 4 1/2 years at how utterly ignorant medical people can be regarding Celiac Disease. I have gotten to the point where if someone does not have Celiac Disease themselves, they know nothing. Our generation of Celiacs are going to have to be the teachers. We are just going to have to lay the groundwork for future Celiacs so they won't have as hard a time.

A small gluten exposure, Jason, or even a larger one will not undo months of gluten-free eating. It's a small blip in recovery and you may or may not feel it's affects. Just pick up and go on from here and stay gluten-free but don't take anything into your mouth containing any form of gluten....you know the drill.

Even if a trusted medical professional says it's OK, it isn't. The only time I have learned it can be safe is if the product is distilled, like vinegar, but many Celiacs react to grain alcohols, even when distilled.

Better safe than sorry!

[Hixon Hiker]

i visited my doc today & the staff allergist gave me these immuno drops for my trip to france to take in the event that I accidentally ingest wheat. she said there is no gluten in the drops & they are safe for celiacs, but there is a wheat extract of some kind in there. Has anyone had problems with these drops? im a bit reluctant to take them and they also cost me $60

Drops are very safe in general and they work better if you use them often enough. I am not sure if I would want wheat extract in sublingual immunotherapy if celiac was seriously considered but if there was trace gluten, likely it would be in the nanogram range, less than the exposure with a thorough gluten free diet. I would press my doc for more info. Drops typically cost a couple bucks a day. Have a good trip.