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Cross Contamination....suggestions Please!

3 posts in this topic

Hello! I'm pretty positive my whole family has issues with gluten. We do not have a DX...only positive results from gluten-free diet. Myself along with my three children have been gluten-free for almost a year....with a few mishaps here and there. My husband only eats gluten out of the house with the exception of beer. I've posted about this on another 10 year old son has been blinking his eyes and licking his lips until they are extremely chapped. This all started after returning home from a vacation in October. We were not gluten-free on vacation. (his twin was DX with a low wheat allergy and this is why we started gluten-free....he had a rash and going gluten free cleared it).

So, he has been blinking (hard blinks similar to tics) since October. We go back to eating gluten free and he finally stopped blinking on 1-4-13!! YAY!! :)

We went shopping and my husband wanted to go out to eat the next day (1-5-13). My husband called the restaurant (flaming amy's burrito barn)

and was told they had a few items that were gluten-free.

We arrived at the restaurant (after a few hours

of shopping and with starving kids) and the gluten-free

option is hamburger in a bowl topped with

lettuce and cheese. To avoid total meltdowns

(from all, husband included) we ordered a

taco salad with chips. It was gluten-free but the chips

were fried in the same oil as gluten battered

meats....I know it was a terrible mistake! We left

and went to whole foods to do some grocery

shopping.....all 4 practically ran to the bathroom

as soon as we arrived ;) I'm dizzy and have a very noisy stomach. We leave the store and go to the next (approxamently 1 hour after eating). At costco my son starts blinking again and by Sunday his lips are chapped again. My youngest also starts licking his lips until they are chapped as well.

1-11-13 his blinking seems to be almost gone and lips are heeled again!

We have company over the next day (1-12-13) and I do all the cooking....but they thought it would be nice to bake gluten-free cookies and bring them over (gluten home). Well, blinking is back and lips are getting chapped again....ugh!

Now, is it possible to be more sensitive to trace amounts after being gluten-free for a year. Does this happen with NCGI?? Or could this be more like celiac??

I have my husband an appointment to get the full celiac panel done and made sure he has increased his gluten intake at work. He is eating two sandwiches, crackers, pretzels, and cereal daily until his test (next Friday) and he has gained almost 10 pounds (in 2 weeks). He is bloated, pimples everywhere, undigested food in stool, having muscle spasms in arms, and tired!

I do want to have the kids tested but I will wait for summer break. They are foggy brained when on gluten!


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Well, first off I wanna say good job so far. As my neice just reminded me tonight, just think... It could be worse. You sound like you are doing the right things. I don't know what works for everyone else, but I use a bit of kombucha when I think I've been "tainted". If you google it you might find some useful info. :)


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    • are your new negative results with or without a gluten challenge? i think its irresponsible for your doctors to dismiss positive bloodwork. i agree that positive blood results points towards at least potential celiac disease and there is a good chance that there either wasn't enough damage yet or they missed it. pretty sure high Gliadin IgG means you were having an immune response to gluten. ttg IgG is less specific/sensitive than Iga but nonetheless it is an antibody related to tissue damage in the small bowel.
      seems common for GIs to deem celiac blood work as unreliable and then glaze over the fact that biopsy results can also be unreliable.
      if you have/are doing a gluten challenge i would ask for an EMA bloodtest and DGP not just ttg. if not maybe get the genetic test?    
    • I have the same symptoms.  These symptoms have overlapped other issues that I have and have been left untreated for far too long. Now the pain has gotten worst. My GP believes it's my hiatal hernia.  I have pain below my breastbone, pressure pushing up my chest/throat, dizziness and nausea. 
    • Usually I'm using apps to tell me what celiacs have thought about the restaurants in the area and repeatedly eating at a few different places I haven't gotten sick. Now that I think about it, gluten was a definite possibility. I ,however, just got all negative results from all the following tests so I'm guessing I'm doing ok on that front. -Basic metabolic panel -Liver enzyme panel -CBC -Serum IgA -Tissue transglutaminase(tTG), IgA -Tissue transglutaminase(tTG), IgG -Thyroxine(T4), free direct serum -Thyroid stimulating hormone I thought the same thing about positive antibodies and non-celiac sensitivity reading this; l'm seeing his nurse practioner in two weeks so I'm going to take this and basically argue with what he said and see how that goes haha. I'm gonna guess not real well. I'm going to push being tested for other autoimmune diseases in addition.  
    • I was dx with duoedenitis end of August. No mention of a stomach, esophagus or duoendal ulcer. Just a small hernia. Less then 2cm. But I have a LOT of pain right below the breast bone and I jumped when it was recently touched on exam. I can even feel a small bump in the area. I feel so dizzy and unwell, like some kind of bacteria is invading my brain and am very queasy still.  My heart still feels weird too.  Bloodwork normal, a bit low on protein which is unreal because I get a ton of it but it is always is low if I have not eaten. Mildly elevated myeloycytes and basophils. My GI will probably not see me for a week or two, my primary care put me on sucralfate.  As soon as the food hits my digestive system I feel really weird all over, stomach, chest, throat, head. Just feel like I have this horrible thing infecting my body.  Did anyone feel ulcer pain and have it NOT be an ulcer? I suppose one could have developed since August. 
    • Hi AWOL, Since you weren't able to complete the 2 weeks gluten challenge for the endoscopy the results are not necessarily reliable.   So to be err on the side of caution I think you should assume you have celiac disease.  Your doctor should not assume you don't have it either since the challenge was not completed.  He has no proof that you don't have celiac disease.  He does have evidence that you have negative reactions to eating gluten though.
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