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shayesmom

Member Since 11 Nov 2005
Offline Last Active Apr 27 2010 02:03 AM
*****

Posts I've Made

In Topic: I Want Them To Be Wrong!

27 April 2010 - 02:03 AM

The bottom line I want to know is whether there is ANY other problem I could be having that might cause the results (detailed below) that led them to label my problem as celiac. Based on what I've read, all signs point to celiac, but I don't want it to be that!! (And I'd suspect that most of you won't have expertise to declare it possibly something else, but any direction to search would be appreciated.


Villous atrophy confirmed by biopsy is the "gold standard" when it comes to a diagnosis of Celiac Disease. And as someone else already mentioned, the only other thing that could cause it would be dairy, soy or corn intolerance. Lack of improvement on a gluten-free diet would only point to the need to remove more foods from your diet.

I also agree that normal Vitamin B-12 and Vitamin D levels are not a contradiction of the diagnosis. Vitamin D is mainly obtained through sunlight. Intestinal absorption has nothing to do with it. And Vitamin B-12 is readily available through meat and many other foods.

The fact that all other tests confirm the diagnosis pretty much negates the need for further testing. There really are no "zebras" to continue looking for. Or rather, you have a positive dx of Celiac. Any other diagnosis would be IN ADDITION to Celiac.

And I am unsure as to what you mean when you say you "don't feel sick like other people do". Exactly what prompted all of the testing? Was it screening prompted by someone else in the family being diagnosed? (In which case, a genetic predisposition would already be established). It is very rare that doctors test for Celiac without an initial visit and symptoms to indicate the tests are warranted. The diagnosis of Celiac usually takes a patient seeing 5-6 different doctors and about 9-11 YEARS of testing. You're actually one of the lucky ones.

Celiac is a clinical chameleon. Symptoms are widely varied (200+ possible symptoms). Some people have diarrhea, others are chronically constipated. And I believe that over half do not have the GI issues at all.

Reflux can be a symptom of celiac disease, but it can also be an indicator of other food intolerances or of too much/little stomach acid. The persistance of reflux just indicates that you need to continue investigating this portion of your symptoms outside of the celiac disease diagnosis. It by no means nullifies the diagnosis. You have Celiac Disease.

One of the best resources that can help you in figuring out the reflux portion would probably be the Related Disorders section on this site.

I am sorry that you are in denial. And I do understand the denial you are in. This diet is very difficult to get behind in the beginning. It will take about a year before it becomes second nature. There are many here who would love to have the positive dx you have received to reaffirm their decision to be gluten-free. It can be even harder to be on this diet when the tests don't point to the dx, but the resolution of symptoms on the diet do.

I think that in this instance, you just need to take it a day at a time. Life without gluten is challenging...but it does get easier. And keep in mind that some folks are asymptomatic...until they get diagnosed with stage IV cancer induced by undiagnosed/uncompliant celiac disease. And then, it is often too late to do anything about it. I've yet to meet a pancake that was worth that. :)

In Topic: Adhd Medications

30 March 2010 - 04:11 AM

Thank you. We have changed meds and dosages several times. He's now taking Ritalin SR 40 mg in the am and a boost of regular Ritalin 10mg in the afternoon to get him through homework. He's actually doing beautifully on this combo. I just still really hate the idea of giving him drugs every day. I have some friends who have kids with Autism. They kept telling me that the need for meds would go away with the diet. I think they are full of beans now, LOL.
Both of my boys have ADHD, and a really bad case. The good news is that the meds work for them. I guess I just need to resign myself to the fact that they will probably be on it for a long time.
The diet has eliminated all of their tummy aches, vomiting and headaches, so in the grand scheme of things, we're all good. Thanks for your comments:)
janie

ADHD can often also be helped by avoiding certain chemicals (preservatives, food colorings, food additives). There also is often a problem with dairy. I've known of a few people who tried adding omegas and enzymes to the mix with really good results...including getting off the medications. For more info, you can check out this link and the subsequent supporting links. http://www.enzymestu...nditionadhd.htm

Glad to hear that things are getting better already!

In Topic: Celiac And Enuresis

07 March 2010 - 03:27 AM

Considering the family history, it is likely that gluten is the culprit behind all that you've been experiencing with your children. Though they may not be thrilled with the prospect of going gluten-free, they may be surprised at how well they do on the diet. I'd definitely give it a shot.

As a side note, I would recommend also supplementing with D-Mannose for the child that is getting frequent bladder infections. It quite often stops the infection in its tracks. Generally it takes about 10 minutes to start working. http://www.associate...or_bladder.html

My daughter is sensitive to a lot of foods and chemicals/medications. The D-Mannose has been wonderful to have when we've dealt with bladder infections. Our doctor was seriously impressed that the bladder infection cleared up so quickly (the first infection we had him dx the infection and then went back in to make sure it was gone). And our daughter was just happy the pain went away almost immediately.

In Topic: Best Test For Food Allergies Children

07 March 2010 - 02:55 AM

Hi I want to have our son tested for other food allergies as well. Any opinions on which is the most reliable. I was considering the Elisa test (blood test). Does anyone have any ideas on the best way to test?

If you're looking for food allergies, then yes, the most reliable thing to do is the scratch testing combined with the CapRAST. The combined result of those two tests usually are fairly accurate.

However, if you are suspecting food intolerances, then the ELISA could be useful. But you do have to keep in mind that if there's a problem with leaky gut, the ELISA may find antibodies to certain foods simply because you're eating a lot of that item and not due to a true intolerance.

Please be aware that these tests are not 100% accurate. There is risk for both false negatives as well as false positives. You may need to follow up with an elimination diet to get a better grasp on what you're dealing with.

In Topic: Dealing With Rude Family Members

17 February 2010 - 12:42 PM

Maybe I'm in a mood here, but I guess I might come back with:

Do you know how ignorant you sound right now? I doubt there's anything I can say that would help you understand, so you just worry about your health and I'll worry about mine.

Of course that might just be my mood right now...I'm sure others have better, more civil answers. But seriously, why is it any of their business? People can be incredibly rude. When I was talking to the mother of the boy who thought it was funny to throw bread on my son's lunch (first gluten-free lunchtime experience at school) she thought it was completely ridiculous that my son referred to gluten as poison. Some people are just jerks.

LOL! The "mood" must be catchy because my first thought was "And this affects you HOW???".

Some people really are ignorant. And those same ignorant people have no problem stuffing their faces with non-foods (things made with petroleum, coal tar, car wax) while having the nerve to judge others who are eating real food. Items that are manufactured, processed, artifically flavored, colored, sweetened and chemically "created" are now the "normal" diet. Anything else is considered "extreme". A whole food diet? You must be crazy to deprive yourself in such a way!


Ultimately, you have to be comfortable with yourself and with your choices. If you're feeling better and seeing positive results, than the people who care about you should rejoice for you and with you. If they don't, they have a pretty messed up view on what it is to be a caring and considerate human being.

The problem is theirs, not yours. Don't try to justify your life. You have every right to live it as you deem fit.