New Member - Looking For Advice

[Bluehydrangea]

I've thought for quite some time that I was gluten intolerant. My symptoms have primarily been skin related, i.e. hives, rashes, etc. I sometimes get terrible stomach aches, cramps, constipation gas, etc. Just not every day or every time I eat gluten and it goes away fairly quickly(over 3-4 hours)with nothing lingering for days unlike what I've read many celiacs experience.

The determatologist told me I had eczema and to use a medicated shampoo...that was it. I finally found a new internist who tested me for celiac and ran some type of food panel and autoimmune tests. I had stopped eating gluten (as best I could with occasional slips)six months ago but for three weeks prior to the test I ate gluten.

My celiac test came back negative. Unfortunately the food panel showed a reaction to wheat, corn, eggs, peanuts and pork. I sat in her office and started crying because Iit's hard enough just to try to go gluten free least of all these other things. I'm not even sure what else it tested or if rye and barley were included or not. Then she also told me I tested positive for Sjogren's syndrome but I don't feel like I have dry eyes or dry mouth. I do think though that my immune system attacks my salivary glands when I eat the wrong thing because one of them gets swollen like a golf ball and I itch so badly I want to rip it out.

In any case, this answers some questions for me because when I'd go gluten free I'd still have the scalp breakouts, sometimes on my face, etc. so I thought there was more to this. I feel like this is getting worse and worse. Yesterday I ate some mixed nuts (no peanuts). The entire right side of my face broke out in red bumps. I'm not sure I know what a hive is vs. a bump but I think a hive is much larger. These weren't small and were very noticeable so I guess there must have been peanut particles in the mixed nuts.

CORN IS IN EVERYTHING. I had no idea how much high fructose corn syrup we're ingesting. Even Udi's Bread which was my favorite has some version of corn (i.e. starch, syrup, etc.)

I have to go back to the doctor on Thursday and I want to get more details about what tests she ran, what else I should ask,etc. Can someone please let me know what I need to know.

I also have somewhere read that if you go gluten free for six months or so you might be able to re-introduce some of the foods you had to stop eating. Has anyone had this experience. I realize I may be on the wrong board for this question since this is pre-diagnosis but thought I'd ask anyway.

I know this was a long email so if you've made it this far, thanks for reading. I'm 59 years old so this is awfully late in life to find all this out. At least it seems that way to me.

Thank you!!!!!!!!

[mushroom]

Welcome to the board.

With regard to your negative testing for celiac, this result would have been influenced by the fact that you were not eating gluten for six months except for the three weeks prior. That would be sufficient to give you a negative result as the antibodies start to retreat quite quickly when no longer exposed to gluten and it takes a good two months of gluten consumption to bring them up to testable levels. But you do seem to be accepting of the fact that you should not eat gluten.

Your food panel testing was for the IgE response, which is different from the autoimmune response the celiac panel tests for. It is quite normal for an IgE response to be negative for something that you have an autoimmune response to, and vice versa. In your case your IgE response to wheat was positive, also peanuts and corn. Many of us who cannot eat gluten also cannot eat corn and yes, it is in everything, just like gluten. You may find that you can tolerate low levels of processed corn without too much problem, whereas eating corn chips or tortillas would be a problem. Everyone's reaction is different. Definitely the HFCS sodas are out for you. As for the ability to eat some things once you have healed from the gluten, this is a very individual thing which varies with the amount of healing time and the individual response to a food. Peanuts are seldom recovered, and I don't ever expect to eat corn again - it is too similar to gluten. Eggs you may well get back after a suitable period of time, same for pork.. It is not the avoidance of gluten that counts (although that is necessary to heal the gut) but the avoidance of the specific trigger food so that your body is no longer reaction set to it.

When you see the doctor you should ask for copies of all your testing results and discuss their implications with her. Ask her the questions you've asked here and see what her responses are. You may find that your eczema clears when you take the trigger foods out of your diet. If I were you I would eliminate all nuts, and test each one individually to find out your particular bad actor(s) if any, besides peanuts. Definitely avoid all peanuts, this is not one to mess around with.

As for your question about hives, these are generally more like raised welts than pimples, and can pop up anywhere on the body. My experience has been that specific intolerance rashes show up on certain parts of my body only - some on my face, some on my chest, some on my shoulders, etc. Even the psoriasis seems to have a set pattern. It would pay to keep a food and symptom diary of when you ate a particular food and when you developed a reaction of any kind to try to pinpoint what you are reacting to. You do have to be very careful about cross-contamination. Some of us can eat things that are processed on shared lines, some of us can't, so read all labels and for now you would be best avoiding all processed foods (things that need labels of ingredients) until you can get your body calmed down. Eat meat, veggies, fruit, rice to start with, and then you can start adding things back in one at a time and see what your reaction is.

Good luck at your next doctor's appt. I hope it is a good experience and that you get lots of help.