Reaction to foods and products that used to be okay

[Momtomen]

I went gluten free 2 1/2 years ago on the recommendation of my previous doctor, who had no explanation for my frequent bladder infections and skin rash flare ups. He would always prescribe antibiotics (which helped), but he felt I was taking too many, and made the gluten free suggestion. He did not feel spending $300 on a test was worth it, as I might just have a sensitivity to gluten. His suggestion was life saving, although even after 2 1/2 years, I still get reactions to things without realizing they contained gluten and have to change what I am eating (certain vinegar in salad dressings, gluten-free Oats, Ice Cream). But the more I gave up, the more sensitive I became to even the slightest amount of anything that I might be sensitive to.

I developed canker sores in my mouth, and had to find a gluten-free toothpaste. My allergies all of a sudden became extreme until I found gluten-free shower soap and body lotion. Now it's happening to some of the foods I eat. Last week I had some gluten-free guacamole and became bloated and uncomfortable, when before it never bothered me. I then had some fresh avocado on my salad and immediately felt my tongue start to tingle and knew I was having a reaction, and spent the next 2 days with muscle aches and tiredness until it passed. 

Every time I think I have healed, I consume something that gives me a reaction and I have to start all over. I read labels very carefully, and have a gluten-free app on my phone, which I use to scan items in the store to see if they are Gluten Free. But I wanted to ask if there was anyone else this has happened to? Are there things that used to not bother you, but do bother you now?

My new doctor understands my Gluten Free lifestyle, but she's not a specialist and I have found that doing my own research works better that asking her. There is no way I could go back to eating gluten so I can take a blood test just to 'prove it'. I would become too sick.

[kareng]

1 hour ago, Momtomen said:

I went gluten free 2 1/2 years ago on the recommendation of my previous doctor, who had no explanation for my frequent bladder infections and skin rash flare ups. He would always prescribe antibiotics (which helped), but he felt I was taking too many, and made the gluten free suggestion. He did not feel spending $300 on a test was worth it, as I might just have a sensitivity to gluten. His suggestion was life saving, although even after 2 1/2 years, I still get reactions to things without realizing they contained gluten and have to change what I am eating (certain vinegar in salad dressings, gluten-free Oats, Ice Cream). But the more I gave up, the more sensitive I became to even the slightest amount of anything that I might be sensitive to.

I developed canker sores in my mouth, and had to find a gluten-free toothpaste. My allergies all of a sudden became extreme until I found gluten-free shower soap and body lotion. Now it's happening to some of the foods I eat. Last week I had some gluten-free guacamole and became bloated and uncomfortable, when before it never bothered me. I then had some fresh avocado on my salad and immediately felt my tongue start to tingle and knew I was having a reaction, and spent the next 2 days with muscle aches and tiredness until it passed. 

Every time I think I have healed, I consume something that gives me a reaction and I have to start all over. I read labels very carefully, and have a gluten-free app on my phone, which I use to scan items in the store to see if they are Gluten Free. But I wanted to ask if there was anyone else this has happened to? Are there things that used to not bother you, but do bother you now?

My new doctor understands my Gluten Free lifestyle, but she's not a specialist and I have found that doing my own research works better that asking her. There is no way I could go back to eating gluten so I can take a blood test just to 'prove it'. I would become too sick.

Just a thought- because these gluten-free foods - like a fresh avocado bother you, maybe it’s not gluten?  Or gluten is only part of the problem?  Hate for you to get stuck in the “ gluten is causing my problems” rut and miss a real problem.  I know some people that used to post in this section found they had something besides Celiac/ gluten causing their issues.

[pikakegirl]

Have you been to an allergist for wheat or gluten allergy? Even a family dr can order a blood test. I have more food intollernces now that i am gluten free. More so things i ate with gluten pre diagnosis.

[cyclinglady]

Yeah, that might have been me.  Turns out that even going on the Dr. Fasano diet, I was still not well.  I thought I was going crazy.   I finally went back for an endoscopy after a suspected glutening last year.  Turns out that my villi had healed, but that I had Chronic Autoimmune Gastritis (which thankfully is no longer flaring due to time and patience).  

Consider seeing a GI and get tested for other issues like Crohn’s, SIBO, H. Pylori, allergies, etc.  

[Ennis-TX]

Ditto many of the above, but wanted to say, I had many of my food intolerance issues just crop up after going gluten free. I also had several of my food allergies come up after getting glutened...oddly the allergies conside with something I was eating when I got glutened. Just a observation but seems when then immune system goes on the attack with gluten, other things become collateral damage and the body "associates" them with part of the problem. I have had intolerance come and go and some stick around. Read up on food intolerance issues, and see if this might also help address some of the issues.https://www.mindbodygreen.com/articles/are-food-sensitivities-for-life

[cyclinglady]

5 hours ago, Ennis_TX said:

Ditto many of the above, but wanted to say, I had many of my food intolerance issues just crop up after going gluten free. I also had several of my food allergies come up after getting glutened...oddly the allergies conside with something I was eating when I got glutened. Just a observation but seems when then immune system goes on the attack with gluten, other things become collateral damage and the body "associates" them with part of the problem. I have had intolerance come and go and some stick around. Read up on food intolerance issues, and see if this might also help address some of the issues.https://www.mindbodygreen.com/articles/are-food-sensitivities-for-life

This is so true.  A gluten exposure for me triggers increased antibodies for my other autoimmune disorders and sets off my entire immune system.  I also have the weirdest allergies which are due to Mast Cell Issues.  I get a bug bite and a thousand hives will appear.   celiac disease is part of the four types of Hypersensitivity and they often are interlinked.  

[Momtomen]

Thank you all for your wonderful responses! I think I just needed reassurance that I wasn't the only one this happened to. Since going gluten free, I have not had a bladder infection in well over a year (they were almost a monthly occurrence) nor any sinus infections, allergy congestion (unless I accidentally came in contact with gluten) , and my dental checkups have been great (where as in the past my gums had given me problems). So, for me, I will not go back to eating gluten again. What I will do is keep a better food diary, and watch for signs from my body telling me it didn't like something I ate. It might just be a matter of me giving up something for a year, then re-introducing it to see if it's still an issue. Of course I will see a doctor if anything serious starts to occur, but I know from a past experience, when describing to a physician that the little blisters on my face occurred after I accidentally ate oats, and then being told by them (with a slight smirk) 'I've never heard of that', that listening very carefully to my own body is, for now, my best defense, along with this community here on these forums. You are all a wealth of information and I am very grateful!

[Levi]

Coeliac Disease symptoms and prevention is a learning curve for all of us. There are so many other issues we get to look forward to from this Disease… and it seems these issues keep increasing the more we maintain a gluten-free diet; our cure is our downfall, so it seems. 

Here in North America Coeliac Disease is still listed as a new and rare disease but we have constantly learned more about it these past 30+ years; whereas, Europe has been dealing with Coeliacs for over 60 years now. I’m sure their Drs and science could help us out.

In Jan ‘07 I researched so much after being Dg’d; as I recall, at that time, I had found that a person could go to practically every fast food place in Europe and order 100% gluten-free foods that we in the USA cud only dream of, here it is almost 13 years later, and… 

 

GOD Bless us, Keep us, make us YOUR Saints