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Low Dose Immunotherapy

NightSky
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NightSky Explorer
NightSky
Posted

Hi,

I am going to start Low Dose Immunotherapy soon and plan to include wheat as one of the things I'm treated for. Has anyone tried this?

I am not diagnosed as I took gluten out of my diet years ago and I have been super sensitive for the last two years with multiple food and chemical sensitivities.

My hope is that LDI will reduce my sensitivity to gluten so that I can eat foods such as animal products reared on gluten (eggs etc) and also rice which has a small but significant risk of tiny trace elements of gluten cross contamination. I have been on the Fasano Cross Contamination Elimination Diet for a couple of years but even more strict due to crazy sensitivity.

Any experience welcome x

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cyclinglady Grand Master
cyclinglady
Posted

I do not know anything about the immunotherapy you will undergo, but if you have celiac disease, you will never get gluten back.  It stays with you for life, but it can go into remission while on a gluten free diet.  The therapy might help if you have a wheat allergy (IgE).  If you have been on the Fasano diet for years and saw no improvement, I would think that you are not dealing with a celiac-related issue.  It must be something else.  

Has Lyme disease been ruled out?  Mast Cell Activation?  Maybe get an endoscopy?  I had a repeat endoscopy after not getting a response from the Fasano diet.  Turns out my small intestine was completely healed.  Celiac disease was not my current issue.  Gastric biopsies revealed Chronic Autoimmune Gastritis.  I was doing a great job at being gluten free.  

  • 4 weeks later...
healthysquirrel Enthusiast
healthysquirrel
Posted

I would love to know more about this treatment, how are you doing now NightSky? 

NightSky Explorer
NightSky
Posted
  • Author

Hello,

Yes I have no plans to eat gluten ever again! I just want to eat things like Humous but can't because I get gluten-like reactions from cross contamination and all grains.

I found out from genetic testing that I don't have celiac disease. I was concerned that it could be refractory, with all the health issues attached to that so that's a relief. 

As I'm not celiac, I don't know if Low Dose Immunotherapy is as relevant for you healthy squirrel. I'll report back though. I won't start for at least another month. 

Best wishes, 

 

  • 2 weeks later...
healthysquirrel Enthusiast
healthysquirrel
Posted

hello,

I am curious about immunotherapy, but not for myself, just as a concept and curious to see if it helps you.

humus, yes I totally understand!!!! I can't eat store bought humus anymore, it just started when i went gluten free. BUT I but can eat it if I make it myself. I could not believe it, now I make a bit once in a while and its fine with my digestive system.

 I hope your treatment works for you!

ravenwoodglass Mentor
ravenwoodglass
Posted
On 10/15/2018 at 3:04 AM, NightSky said:

I found out from genetic testing that I don't have celiac disease. 

 

 

That is not a for sure that you are not celiac. There are more than just the two most common genes that are associated with celiac disease. I am very thankful that I was diagnosed before gene testing became common. I would be dead by now. I am a double DQ9 and that gene was just discovered to be associated a few years back.

By low dose immunotherapy are they talking about the therapy where small doses of the allergen are introduced into the system in an attempt to make the person less sensitive to the allergen? I hope whatever therapy you are doing is able to help you. IMHO you should also be very strictly gluten free. Celiac can send the immune system into hyperdrive (My allergists term) and cause false allergy reaction. I was allergic to 98 out of 99 substances when I was tested. After a few months gluten free only a couple mild true allergies remain.

  • 1 month later...
NightSky Explorer
NightSky
Posted
  • Author

Hello, 

I have started Low Dose Immunotherapy. Firstly this is just to support my existing limited diet, to avoid me becoming sensitive to what I am currently eating. They have helped me stop reacting to B vitamin supplements that previously caused problems. 

 In a couple of months I can start LDI in order to reintroduce some foods. As stated previously, I will never again eat gluten but I would like to eat foods like rice so this should help.

I feel better since I started it and I must be looking a lot younger as I keep getting asked for ID despite being in my late 30s. 

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    • trents
      celiac, chocolate and alcohol

      By trents · Posted

      So, you had both and endoscopy with biopsy and a colonoscopy. That helps me understand what you were trying to communicate. No, no! It never occurred to me that you were trying to mislead me. It's just that we get a lot of posters on the forum who are misinformed about what celiac disease is and how it is diagnosed so I need some clarification from you which you were so gracious to give.
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