19 replies to this topic

[jknnej]

That stinks that you got sick at lunch-definitely sounds like you were glutened.
I itch like crazy, too.
No rash, but once I scratch myself raw I have scabs on my arms and feet. It's awful and it comes and goes. Sometimes I don't have it, then for awhile I will...it's odd.

[discountshopper]

Thank you for this thread and I am glad I am not just crazy! I have never had "food allergies" and yet I know I have been affected by them in the past. I just lived with it, thinking it was just "something I ate." Now after being gluten-free for 2 months, with dramatic results (hey, I didn't know it wasn't normal to have these symptoms - they were just like other family member's symptoms! ) and improved health, I am having a serious reaction to "something." I posted the thread "weird reaction" after waking up with hives at 4 a.m. in the morning. The hives continue to drive me crazy, now a day and a half later. They worsened considerably after running through an airport to catch a flight -- head to toe red itchy splotches that felt like they were burning with itchiness. After cooling down it got better, but I'm still having an itch-o-rama after arriving home.

So here's my question (which Claire and others alluded to): after going gluten-free, does it make your symptoms worse when you do get gluten? Everything I have experienced seems to indicate that the answer is YES. I *never* had symptoms like I do now!!

So if you eliminate the gluten and your body's auto-immune reaction to it, does it then "kick up" the reaction to other foods you might be sensitive to? My Enterolab casein sensitivity test was positive (got it just about 3 weeks ago) but have been traveling and so was waiting to go CF until coming home -- now.

Do allergy tests indicate auto-immune responses to food proteins? I am guessing they are not too precise as my son tested negative for ALL foods, yet has celiac disease and also tested positive for casein sensitivity the same time I did. Therefore, how do you go about identifying the cause of things like hives if they are related to food protein response rather than a "traditionally identified" food allergy? Who is the appropriate professional to seek out? I refuse to live with these hives without actively searching for their cause -- but I do not believe that meds are the way to "fix" something that can be cured with finding the right culprit and changing your diet. Anyone have any experience to share with a successful diagnosis of the causes?

I was also reading about hives in general and found several places that suggested that they may be due to yeast or bacterial overgrowth. This was interesting to me in that I have had chronic bacterial issues for years. One of the "dramatic health improvements" I have experienced since going gluten-free is that the "chronic sinus infection" that I have had on and off for 3 years has abated. I need more data to conclude that going gluten-free was the exact reason, but at this point it seems fairly obvious since I had one for 3 months when I started gluten-free and now I don't. I have not changed anything else.

Sorry for the long post -- but please share if you have some advice, suggestions or experiences!
Thank you all for the time you take to share information!!! I have found more information applicable to my health from you guys than I have from any doctor I've ever visited! Thanks!

[Claire]

Do allergy tests indicate auto-immune responses to food proteins? I am guessing they are not too precise as my son tested negative for ALL foods, yet has celiac disease and also tested positive for casein sensitivity the same time I did. Therefore, how do you go about identifying the cause of things like hives if they are related to food protein response rather than a "traditionally identified" food allergy? Who is the appropriate professional to seek out? I refuse to live with these hives without actively searching for their cause -- but I do not believe that meds are the way to "fix" something that can be cured with finding the right culprit and changing your diet. Anyone have any experience to share with a successful diagnosis of the causes?

I was also reading about hives in general and found several places that suggested that they may be due to yeast or bacterial overgrowth. This was interesting to me in that I have had chronic bacterial issues for years. One of the "dramatic health improvements" I have experienced since going gluten-free is that the "chronic sinus infection" that I have had on and off for 3 years has abated. I need more data to conclude that going gluten-free was the exact reason, but at this point it seems fairly obvious since I had one for 3 months when I started gluten-free and now I don't. I have not changed anything else.

Sorry for the long post -- but please share if you have some advice, suggestions or experiences!
Thank you all for the time you take to share information!!! I have found more information applicable to my health from you guys than I have from any doctor I've ever visited! Thanks!

I am reposting this piece that alerts to this possibility for continued symptoms:

High Prevalence of Small Intestinal Bacterial Overgrowth in Celiac Patients with Persistence of Gastrointestinal Symptoms after Gluten Withdrawal.

OBJECTIVE: Celiac disease is a gluten-sensitive enteropathy with a broad spectrum of clinical manifestation, and most celiac patients respond to a gluten-free diet (GFD). However, in some rare cases celiacs continue to experience GI symptoms after GFD, despite optimal adherence to diet. The aim of our study was to evaluate the causes of persistence of GI symptoms in a series of consecutive celiac patients fully compliant to GFD. METHODS: We studied 15 celiac patients (five men, 10 women, mean age 36.5 yr, range 24-59 yr) who continued to experience GI symptoms after at least 6-8 months of GFD (even if of less severity). Antigliadin antibody (AGA) test, antiendomysial antibody (EMA) test, and sorbitol H2-breath test (H2-BT), as well as esophagogastroduodenoscopy (EGD) with histological evaluation, were performed before starting GFD. Bioptic samples were obtained from the second duodenal portion during EGD, and histopathology was expressed according to the Marsh classification. To investigate the causes of persistence of GI symptoms in these patients, we performed AGA and EMA tests, stool examination, EGD with histological examination of small bowel mucosa, and sorbitol-, lactose-, and lactulose H2-breath tests. RESULTS: Histology improved in all patients after 6-8 months of GFD; therefore, refractory celiac disease could be excluded. One patient with Marsh II lesions was fully compliant to his diet but had mistakenly taken an antibiotic containing gluten. Two patients showed lactose malabsorption, one patient showed Giardia lamblia and one patient Ascaris lumbricoides infestation, and 10 patients showed small intestinal bacterial overgrowth (SIBO) by lactulose H2-BT. We prescribed a diet without milk or fresh milk-derived foods to the patient with lactose malabsorption; we treated the patients with parasite infestation with mebendazole 500 mg/day for 3 days for 2 consecutive wk; and we treated the patients with SIBO with rifaximin 800 mg/day for 1 wk. The patients were re-evaluated 1 month after the end of drug treatment (or after starting lactose-free diet); at this visit all patients were symptom-free. CONCLUSIONS: This study showed that SIBO affects most celiacs with persistence of GI symptoms after gluten withdrawal.

Blood testing for reactive foods can be helpful but is far from foolproof. It tends to error on the side of false positives. It does usually identify the real culprits but it is hard to sort them out if it gives you too many that are not valid. In my case there were foods that I already knew were a problem, some that I didn't know about that were genuinely problematic. There were also about 10 that I had doubts about. Those are the ones you subject ot a personal elimination test. Take each one away for a week or two - then reintroduce. If there are no symptoms - keep that food in your diet and go on to test the next 'suspicious' one. Claire

[depechemead]

What do you guys do for itchy relief? It usually takes about an hour for me to feel not compelled to cut off my skin. I scratch so much it turns to welts. I stand in the shower and let cold water run on my legs. I take allergy pills like allertec. I the put DML lotion on and stand in front of the fan. It's unbarable. There is usually no rhyme or reason for the itchiness.

[kareng]

What do you guys do for itchy relief? It usually takes about an hour for me to feel not compelled to cut off my skin. I scratch so much it turns to welts. I stand in the shower and let cold water run on my legs. I take allergy pills like allertec. I the put DML lotion on and stand in front of the fan. It's unbarable. There is usually no rhyme or reason for the itchiness.

This thread is 7 years old so these posters are not around any more. There are more current threads about this. Look under the DH section.