Atypical Symptoms

[Janice1014]

Hi,

I am only about 8 mos into this gluten-free lifestyle, but I was wondering if anyone else has the symptoms I seem to have. I do not have the intestinal issues that seem so common with wheat/gluten sensitivity but I get tight in my chest and get a lump in my throat. Also, I was getting very very tired and irritable--almost depressed even-- in addition to the difficulty breathing. I was told by my doctor that only a biopsy can indicate gluten/wheat allergies but another doctor did blood work. It came up negative for celiac but I KNOW that wheat/gluten is my problem. I have eliminated it and feel fine. Except today I ws shopping and was getting a headache from missing lunch so I grabbed a McDonald's new holiday peppermint McFlurry. Oops, before I even got home I could tell it had something in it my system didn't like. I used my inhaler and am still feeling the chest tightness but it is better. I should have know better. Ugh!

Any insight into why my blood work was negative yet I feel lousy on wheat would be a great help. My husband is a natureopathic doctor and has tested me on wheat products and I test that they are not good for me but I am confused.

I also was wondering if I should have a biopsy just to determine there is no damage from gluten intolerance, any thoughts? But I don't even know if it would show up since my symptoms appear to be atypical.

Thanks for any helpful hints. Sometimes I get very discouraged being gluten-free!

Janice

[nvsmom]

Your reaction, in some ways, sounds more like an allergic reaction than a celiac reaction to me, but we all react very differently so there might be someone on the board who is similar. Fatigue and depression are not unusual to celiacs (or many other autoimmune diseases for that matter) but the chest tightness and lump sounds asthmatic.

You could be a celiac, since somewhere close to a quarter of all celiacs test negatively on the blood tests. You could do a biopsy to look for damage if you are fairly sure you are having an autoimmune reaction to gluten, but the biopsy isn't infallable and damaged areas can be missed.

It could also be Non-Celiac Gluten Intolerance (NCGI) which has many of the same symptoms as celiac disease but the intestinal damage is not present. From what I understand, it can make a sufferer every bit as uncomfortable as untreated celiac can be; the only problem is that you can't test for it except to see how you do on a gluten-free diet.

Best wishes to you. I hope you feel better.

[VeggieGal]

Hi Janice, I agree with nvsmom that it could be more of an allergy.

I have similar reactions when I have milk and cheese.. and also my levothyroxine meds. My throat feels like it swells, inhibits my breathing, causes phlemn and a tightness in my back and chest. When I eat dairy-free Im so much better.

Hope you find out what is causing your symptoms.

[Takala]

Even if it is "only" a wheat allergy, you still have to avoid wheat protein, aka "gluten," so don't be shy about hanging around and learning. As long as you recognize that you need to avoid the wheat family around here, you have common interests and nobody is going to quibble over diagnosis status whether it is an "intolerance," or something else... (as long as you don't start telling us to eat it !).