Advice please.

cujays · Joined: 08 Jan 2012 Posts: 1

I havent felt well for about 8 years. If there is a symptom, I have had it. If there is a test, I have had it.
My symtoms have been swollen lips, body itching, head aches, dizziness, diarrhea, blood in stools, sore lower back, stomach pain and a bunch of others I cant even remember.
Five years ago, I had the upper and lower gi's and they found a hiatal hernia. Since then, I have had other tests all come back negative.
About 8 months ago, a new symptom appeared. I couldnt swallow. Went back for another round of upper and lower gi tests and this time they found that I have eosinophilic esophagitis, which they believe is caused by an allergy. I had a suspicion that I might have issues with wheat, so I made sure they tested for celiac, which turned out to be negative. I decided to give up wheat anyway and after several weeks, I felt much much better. Even had my first solid stool in years.
So with celiac ruled out, I went to an allergist to test for wheat allergy. Again that test was negative. There is no question in my mind that I have some issue with wheat or gluten or something.
I recently went to a bakery and picked up some "gluten free cinnamon rolls". Made me sick. I dont know what the ingredient were. I also tried making gluten free bread. Made me sick. the main ingredients were bean flour, corn starch, and sorghum flour. I havent had issues with corn. I practically live on tostitos. I also havent had issues with eating green beans and chili. So beans seem ok.
What is wrong with me and why is every test I have had come back negative?

mrsppmrxky · Joined: 09 Oct 2004 Posts: 1789 Location: GF Kitchen

You could just be gluten sensitive. Sometimes grains that are ground use the same milling process that wheat is ground on.

For example: Quaker Oats are wheat free, but they must use the same grinding stone because the testings that were done for gluten showed a very high wheat gluten content.

If this bakery also has gluten products, I would almost bet my right arm (it was hurting all day, so not a huge gamble. LOL) that the roll you had is contaminated in some way with gluten.

My husband is allergic to so many things, and will have a muscular and neurological reaction within minutes as well as having to be near a rest room within 5 min of eating something he is allergic to. When they did the allergy testing, it came back as 'slightly' allergic.

I figured out that he has a salicylates allergy. He can only have very little cinnamon if any at all.

My hubby used to eat corn chips all the time, but now can't even touch corn.

Look up the boot camp thread here on the forum and read through there. Take your diet back to the very basics and keep a food journal. This is long and frustrating to do, but you will be able to figure out what you are allergic to. (might not be allergy testing positive reaction worthy) but it makes your body react by ingesting or applying to your body.

I hope you feel better and welcome to the forum.
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celiacmaine-iac · Joined: 19 Dec 2007 Posts: 2131 Location: Maine

Sorghum can be very rough on the tummy until your body gets used to it. When I first started using sorghum I had to eat no more than a half portion of whatever contained it, otherwise I ended up with cramping and diarrhea. Eventually I kept on increasing the amount I used, and can tolerate it. If I haven't had it in a while I have to start the whole process all over again.

I can sympathize with your frustration over the results of your testing. Every test I had done was negative for CD, even though there is a large number of diagnosed celiacs in my family. All I can say is that after I went GF I got my life back, so I had my answer.
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Steph

Estaphania · Joined: 11 Mar 2010 Posts: 109

There is a connection between cc and celiac disease. http://gastroenterology.jwatch.org/cgi/content/citation/2007/921/2

False negative tests for celiac disease are possible.

If the bakery wasn't careful about cross contamination with the gluten free buns, they probably had enough gluten in them to make you sick.

To ensure a gluten free diet it is best to stick to whole foods.

smalltownslackermom · Posted: Sun Jan 15, 2012 9:59 am Post subject:

^ What Steph and Mrs P said.

Also, green beans aren't much like chili beans or the garfava flour put in GF baked goods; they're mostly pod. Beans like garbanzos and pintos and kidney all need a lot of soaking to break down the antinutrients they contain (phytates) and to be the most easily digestible for humans. It may be that chili doesn't bother you because the beans are usually pretty well cooked-out by then but garfava, well, I just don't know that it's all that well broken down before it's milled.

Gluten-free breads famously contain gums that some people are sensitive to. Xanthan gum is a highly effective laxative in larger volume. http://en.wikipedia.org/wiki/Xanthan_gum#Allergies

Guar gum is also a laxative
http://en.wikipedia.org/wiki/Guar_gum#Nutritional_and_medicinal_effects

I get discomfort from either of the above and additionally psyllium seed (think Metamucil) which Bittersweet GF Bakery in the St. Paul area uses. They make these awesome almond cakes and I will deal with the discomfort for one of those in cupcake form but that's it. I can't eat the bread in quantity.

See gf girl's blog entry on not using gums:
http://glutenfreegirl.com/chia-seeds-and-flaxseeds/

Since this is new to you, you may wish to go cold turkey on breads and pastas etc for a few weeks to two months. An elimination diet for a month and then you add back in possible offenders works for some to figure out what foods bother them. There's also the low-FODMAPS diet (http://online.wsj.com/article/SB10001424052970204554204577023880581820726.html) which is similar to the SCD (SPecific Carb Diet) and both of those eliminate wheat because it's a common offender even in people who test negative to celiac markers.

http://www.drcranton.com/elimination_diet.htm
http://www.breakingtheviciouscycle.info/beginners_guide/beginners.htm

So as you can tell from the various posts here, there are several possibilities why that bread may not have suited you. It's a funny thing, once you start feeling well, things that make you feel crummy become so much more obvious. So if you clean up or eliminate stuff for a while, get feeling great, then figure out what bothers you and work around it. I personally think the pay off of feeling good is SO worth it. good luck!
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son - high ttg - 4/09, pos. biopsy 5/09
self - negative bloodwork 5/09, pos. biopsy 11/09
sister - gf for ~3 years and is a new person
niece - positive ttg 2/10, foregoing biopsy