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Mr. Pep'r

I Need More Testing

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I have been gluten free since the end of July and I have to tell you the best I ever felt was the first month (Aug) after finding out I had Celiac. With in days I felt great!

Since Sept. I have have truly gone backwards and I need to find out why. It feels like a truck hit me, I have a hard time getting up in the morning, my bathroom trips are like pre-gluten free days, I always feel I have to go to the bathroom (never feel done), and I am nervous again.

Are there other tests that can be done to determine if I have additional food allergies? I really do not want to have to try eliminating certain foods at a time to see if they have certain reactions. My job and lifestyle makes just the gluten-free diet almost impossible which leads to my anxiety and nervousness. I do not know if I can actually continue if I get my old job back. I am home every night now and still having issues.

Not feeling any better.

Rick

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Hi Rick!

Boy, we seem to hear this same story repeated over and over lately on the forum, i.e., people feeling much better at first when going gluten-free and then seeming to have symptomatic relapse after a few months while remaining gluten-free.

Yes, I definitely would get some allergy testing done. It is usual fro Celiacs to develop multiple food allergies/intolerances because of leaky gut syndrome from damage to the micro villi before gluten-free eating. However, do some research first about allergy testing options because all not allergy testing approaches are equal and not all allergy testing labs are equal. Allergy testing for Celiacs usually turns up some false positives and if the lab doesn't handle the testing or the analysis correctly they inadertantly skew the results and generate even more false postives.

Myself, I turned out to have many mild allergies to varios foods (corn, rice, coffee, bakers yeast, peanuts, filburts, milk fat and I don't remember what all when I was tested. Some of them are probably real but others false positives. There are so many of them and they are such common and ubiquitous food ingredients that it would be impossible to avoid all of them consistently and I don't even try. Near as I can tell, they just give me nasal congestion and a little brain fog so I just take Claritin.

Hope this helps, Steve

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Rick sometimes it is recommended to eliminate dairy temporarily because of sensitivity in the small intestine, also look out for hidden gluten in things like salad dressing potato chips etc.. For me it is the little things (constantly changing food labels) that send me off to the bathroom. Some celiac disease patients also have a problem with Casein (a protein in cows milk) or soy.


OSusanna

gluten-free 2 years

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You may want to have the Celiac bloodwork run to see if it your body has/hasn't healed yet from gluten. You could ask your PCP to run the bloodwork again.

happygirl, I actually want to do this and talked to my wife about this very topic.

osusanna, how did you find out that you had a problem with Casein?

trents, thank you for the heads up with "not all tests are created equal".

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Have you checked all meds and supplements? Have you eliminated it from toiletries and non food sources? My pet foods and art supplies got me off and on for a couple of years till I learned. Do you consume many mainstream products from companies 'gluten-free' lists? Many are CC'd and the companies have no requirement to tell us about it. For some of us once we get the large amounts out of our diet our body will start to tell us in no uncertain terms that even the smallest amount is not wanted.

If you have already taken care of all the sneaky aspects of gluten then other intolerances may well be showing up. A good example is soy, for many of us the amount of soy we consume skyrockets when we eliminate gluten. Casien is another that may become problematic. You could think about going with Enterolab to see if you are making antibodies to those substances as well as eggs and yeast. You may find their testing to be helpful.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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Have you checked all meds and supplements?

I do not take any meds and the multi that I used to take was gluten-free

Have you eliminated it from toiletries and non food sources? My pet foods and art supplies got me off and on for a couple of years till I learned.

We never thought to check the toiletries! The dog food may also be something to look into. Does simply washing your hands after handling it not work?

Do you consume many mainstream products from companies 'gluten-free' lists? Many are CC'd and the companies have no requirement to tell us about it. For some of us once we get the large amounts out of our diet our body will start to tell us in no uncertain terms that even the smallest amount is not wanted.

All the products we have at home are from the gluten-free section of the store and they all but a few say gluten-free. I wondered about that as well, many say there is no wheat or gluten in their product but somehow I feel awful after eating it.

If you have already taken care of all the sneaky aspects of gluten then other intolerances may well be showing up. A good example is soy, for many of us the amount of soy we consume skyrockets when we eliminate gluten.

I am not a big fan of soy and try to avoid it. Most everything I eat is home cooked.

Casien is another that may become problematic. You could think about going with Enterolab to see if you are making antibodies to those substances as well as eggs and yeast. You may find their testing to be helpful.

How do you get tested for Casien allergy? Is Enterolab a company or name of a test?

I called the Doctor today to try and get re-tested but I am not holding my breath for a call back. I just asked to have my blood work done and the office made it like I need an office visit! I know what is wrong with me and I just want to check my blood. If this comes back normal than off to the GI specialist I go.

Thank for all the input and help everyone, this is once again starting to stress me the F' out agian.

Rick

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Have you eliminated it from toiletries and non food sources? My pet foods and art supplies got me off and on for a couple of years till I learned.

We never thought to check the toiletries! The dog food may also be something to look into. Does simply washing your hands after handling it n

I feel ok just washing my hands after feeding the fish, but dogs tend to slobber on people and food spills on the floor and they walk all over the house and sometimes on the furniture. I'd go gluten-free with the dog - search this site, I know people have asked about gluten-free dog food before.


Gluten-Free since September 15, 2005.

Peanut-Free since July 2006.

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UUUUGGGGHHHHH

I called both my PCP and GI today to try and get a blood test to check if my antibodies were elevated. My PCP did not think it would show anything and my GI doc is out of town till Monday. Both of the nurses really pissed me off..... talking to me like I had no idea what I was doing for the last 7 months. :angry: believe me I do not want to feel this way!!!!! I am not doing anything on purpose and just want to find out why I am back to feeling this way after feel so well in the first few months.

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Check with EnteroLab to see how they acquire and handle the antigens they use for testing. One common problem with labs is they will use food sources from common places such as the supermarket to make their antigens. If they have not been sterilized they may be cross-contaminated with other proteins that you may have an allegic reaction to instead of the intended antigen. So, the antigen is labled as say "cucumber" but it was contaminated with tomato from the supermarket because some insect ate one and then bored into the other. When they grind up the cucumber to make the antigen they will inadvertantly include tomato protein. When they inject you with the "cucumber" and get a positive you may be actually reacting to the tomato. Do you see what I mean?

Allergy testing can be very helpful but it can also be very misleading. It's best use may be to serve as a starting point to begin an elimation/challenge diet to see what you are intolerant/allergic to in real experience.

Steve

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