Do I Go Back To Eating Wheat Again?

[wildkat]

I have never been tested for gluten intolerance but have done major research about it. My husband suggested going gluten free as a last resort after I had been on thyroid tablets from age 14 thru 35. I still had major diarrhea and went thru the diagnosis of IBS. Not to sound bad but I could see exactly what I ate. The pills made me sick and didn't help. I took allergy shots and had inhailers for three years with minimum help. Skin rashes all of my life on my lower legs, chest and underarms. The dermatoligist said it was the worst rash he had seen and took pictures of it. The salve he gave me helped with the itching. I was tested for gallbladder problems,too. No one ever suggested a wheat allergy. I have been on a gluten free diet for over a year now but I can tell as soon as I eat wheat. My weight is now up to 95 pounds. My family is Italian so we did eat alot of bread and spaghetti growing up. Even my dad had an allergy that caused swelling internally as well as externally that the doctors couldn't identify. He prematurely died of cancer. My question is what should I do? Is it true I would have to eat wheat for a few weeks to get any tests done?

[CarlaB]

If you want to be tested for celiac disease, it would require months of eating a significant amount of gluten daily.

If you know you feel better off gluten, that would be reason enough for me!

[ravenwoodglass]

I have never been tested for gluten intolerance but have done major research about it. My husband suggested going gluten free as a last resort after I had been on thyroid tablets from age 14 thru 35. I still had major diarrhea and went thru the diagnosis of IBS. Not to sound bad but I could see exactly what I ate. The pills made me sick and didn't help. I took allergy shots and had inhailers for three years with minimum help. Skin rashes all of my life on my lower legs, chest and underarms. The dermatoligist said it was the worst rash he had seen and took pictures of it. The salve he gave me helped with the itching. I was tested for gallbladder problems,too. No one ever suggested a wheat allergy. I have been on a gluten free diet for over a year now but I can tell as soon as I eat wheat. My weight is now up to 95 pounds. My family is Italian so we did eat alot of bread and spaghetti growing up. Even my dad had an allergy that caused swelling internally as well as externally that the doctors couldn't identify. He prematurely died of cancer. My question is what should I do? Is it true I would have to eat wheat for a few weeks to get any tests done?

It is true that for the blood tests and the endo that you would have to be actively consuming wheat for a few months to even have a chance of it coming up positive. You have made headway on the diet and you have had a positive reaction to a gluten challenge. It made you sick. It is up to you whether you want to go back on a full gluten diet for the sake of 'proving' what your body is already telling you. You could do gene testing with Enterolab to look for gluten intolerance and celiac genes if you choose to. That would not require you poisoning yourself to get a result. They can not diagnose celiac but they can tell you what celiac genes you carry.

[tarnalberry]

what was the rash that the derm dx'ed you with? what was the rx he gave you for it? perhaps you have DH (dermatitis herpetiformis), which is the skin manifestation of celiac disease, which some people get.

either way, if you know that you feel better on a gluten free diet, why would you choose to do something different that made you feel bad and damaged your health?

[wildkat]

what was the rash that the derm dx'ed you with? what was the rx he gave you for it? perhaps you have DH (dermatitis herpetiformis), which is the skin manifestation of celiac disease, which some people get.

either way, if you know that you feel better on a gluten free diet, why would you choose to do something different that made you feel bad and damaged your health?

I don't want to feel that bad again. I have been to two different doctors that told me I have to eat wheat for two weeks so I could be tested. I'm sure they don't believe me. One told me if I couldn't take the pills for IBS I could find a new doctor. The second one gave me gallbladder tests and wanted to put me on antidepressants. Those made me really sick. I'm not a pill taker and have a difficult time with any medication. I have found that Benedryl childrens dye-free Allergy helps if I somehow get a little wheat in my system. Don't believe them when they say it tastes like bubble gum.

The rash on my legs started like pimples and progressed to what looked like boils that broke and got infected. My legs looked like raw hamberger. It hurt and itched. The dermatoligist said it looked like frunkles but he had never seen a case that bad. It only took about 24 hours to go from a little red bump to YUCK. He gave me Mupirocin ointment (that stuff really hurt) and Mometasone Furoate cream (this made it feel better). I've had the same rash on my chest, lower arms and underarms as a child and back then they called it "Chicken Skin". Frunkles is caused by using a dirty razor. The thing is, I don't shave my chest and I use new razor blades every time I shave. The rash has finally cleared now that I don't eat wheat.

[Beloved]

You know, I had symptoms for months with my Doctor calling them stress and lactose intolerance and eventually when I was talking to him about my sister and her diabetes and my thyroid condition, a light bulb seemed to go off and he said we should test for celiac. He used a blood test and when that came back he told me I have celiac, so I'm going to go gluten-free right now because quite frankly if anything will make the horrible bloating and gas and diarrhea go away then I'm going to get right on it.

He told me I could get the biopsy later and said I should keep eating wheat, but frankly if the blood test says it's there then that's enough reason for me. The only thing that will get me to go back to eating gluten is if my health insurance insists on the biopsy.

[Ursa Major]

Wildcat, if you've been off gluten for about a year, there is no way that eating wheat for two weeks will be enough for an accurate diagnosis. It is more like at least three to six months of eating about four slices of bread every day. And even then you might still get a false negative.

You see, your intestines have healed by now. In order to get positive testing, you'd have to actually destroy your villi again, making yourself very ill, possibly causing irreparable damage in the process. Not to mention malabsorption, the rash you get (which sounds an awful lot like dermatitis herpetiformis to me, which is the outward manifestation some people with celiac disease get), and possibly other autoimmune diseases you may trigger.

I believe that it would be a foolish and dangerous thing to do. I bet if your doctor would have to face the choice he is giving you, he wouldn't do it to himself. Or his wife or child, for that matter.

You know what gluten does to you. Just stay away from it. That is what I am doing, I don't have an official diagnosis, either, and don't care to get one.

[blueeyedmanda]

Honestly, if it was me, if the changes in my diet worked for me, that would be all the evidence I needed. I had the initial bloodwork done, since my doctor suspected that celiac could be what was making me sick. The bloodwork came back, and when it was positive that was all I needed. She said there was no reason to do biopsies. I don't think I could go back on gluten, I felt so horrible right before I found out about celiac....I personally would never go back for anything. My opinion though.

[darlindeb25]

Wildcat, be sure to go totally gluten free though, not just wheat free. The rash to me does sound like DH, and if you are not taking all gluten out of your system, then you may have more problems. Try reading the books, "Gluten Free For Dummies" and "The Gluten Free Bible", they are both wonderful books for celiac's to read. I love the books for dummies, they are so informative.

Doctors rarely understand celiac disease. Many are diagnosing it more now and yet, still do not understand it.

[gfp]

Wildcat, if you've been off gluten for about a year, there is no way that eating wheat for two weeks will be enough for an accurate diagnosis. It is more like at least three to six months of eating about four slices of bread every day. And even then you might still get a false negative.

Well you can't really be definitive, its possible for the blood tests to be positive after a week depending what they call 'significant', just unlikely it is significant... the problem is you have to eat enough to be really ill, regardless of the time it takes. The problem is if you do two weeks your results will be compared to a 'norm' of 6 months... and I doubt they will then say "but you were only eating for 2 weeks so we will take the small positive as diagnostic... " and the most likely outcome is "you have mildly elevated antibodies... keep eating wheat and we will test again in <insert a random period based on your insurance>. "

As Ursa say's for the biopsy to be postive will take MUCH longer. On on top of this the nature of the biopsy makes it a lottery, if they sample the correct places or not... and the only way to be sure is by destroying pretty much all the villi. By this time you will be VERY sick ...

Continuing as Ursa said

You see, your intestines have healed by now. In order to get positive testing, you'd have to actually destroy your villi again, making yourself very ill, possibly causing irreparable damage in the process. Not to mention malabsorption, the rash you get (which sounds an awful lot like dermatitis herpetiformis to me, which is the outward manifestation some people with celiac disease get), and possibly other autoimmune diseases you may trigger.

I believe that it would be a foolish and dangerous thing to do. I bet if your doctor would have to face the choice he is giving you, he wouldn't do it to himself. Or his wife or child, for that matter.

I so wish I didn't agree so strongly... especially the latter part!!! The danger is the damage won't properly repair ... you trigger something nasty.. etc. and also because of the maladsorbtion this just spirals... even when you stop your body is in such a mess with destroyed villi and maladsorbtion that it is incredibly hard to turn this around. Your body needs nutrients to repair but can't get them... the very trap we started off in.