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Member Since 17 Apr 2004
Offline Last Active Today, 02:14 PM

Posts I've Made

In Topic: False Negative Test Results?

18 October 2014 - 03:32 AM

 False negatives do happen. It delayed my diagnosis for many years. However if you want to have celiac related testing done you have to be eating gluten. If you have stopped and improved and any introduction makes your symptoms come back then you know that your body doesn't want it. That will make a challenge difficult.

 You should get the total IGA and IGG done. I have never seen a 0 for those gliadin related tests before. Doesn't mean it doesn't happen I have just never seen it.

You both have very low B12. A sublingual supplement will help with that. Do ask the ped before giving it to your child though. Low B12 is quite common for folks with celiac. 

In Topic: Anxiety?

17 October 2014 - 11:41 AM

I had problems with both anxiety and depression prediagnosis. I no longer have any issues with depression unless glutened. My anxiety didn't resolve but that came from trauma rather than celiac. Many do have resolution of anxiety off gluten but if it doesn't after a couple months don't be afraid to get a bit of counseling to help you deal with it. 

In Topic: Treating Celiac With Psychedelic Drugs?

13 October 2014 - 01:52 AM

The only way something like that would be feasible is if they were able to remove the psychedelic aspect of the drug. I don't think the general population would get much done during the day while they were watching the walls turn colors and their grasp on the reality around them was oozing away. Psychedelic drugs can also be dangerous for people with certain mental health issues. 

In Topic: Diagnosing Dh Rash

10 October 2014 - 02:12 AM

I have had biopsy's, 5 of them to be exact, none proved anything, nothing was found.

You are caught up in medical semantics. LIke the example I gave you about pulmonary disease.

The ONLY thing i can say for certain based on MULTIPLE doctors who I have seen is that i do NOT have a Wheat allergy (which also is a "Celiac disease")

Celiac is not an allergy. Celiac is an autoimmune disease that can affect any organ in the body. An allergy causes a histamine reaction and celiac causes an antibody reaction. The histamine reaction can cause a rash along with swelling in the throat. The celiac autoimmune reaction also causes a rash but without the throat swelling that you are seeing. 

Do you perhaps have both a true allergy and celiac disease? Possibly. How were your biopsies done? Did they biopsy the lesion or the skin next to it? If they biopsied the lesions then of course they were negative. For a celiac biopsy they need to biopsy the intact skin next to the lesion. 

If you have celiac and are continuing to do celiac risky things like going to restaurants and ordering what 'looks to be gluten free' that is what is keeping your DH (if that is what it is) active. You are also causing damage to other organs from the antibodies coursing through your system. 

While it can take up to 2 years for the antibodies to leave the skin in someone with celiac they do eventually leave. You are still having reactions after 20 years which to me says if you are celiac ( and you are if you have DH) you are risking serious, unrepairable damage to organs like your brain, liver, etc. 

Please read the links others provided. Print the info out and share it with your doctors. 

In Topic: To Biopsy Or Not?

09 October 2014 - 12:27 PM

Welcome to the board. 

What were your blood test results? Were they high enough that your doctor was comfortable with diagnosing you without the endo? If that is the case then IMHO the choice of whether to biopsy or not is up to you. Since you have already started the diet the needed challenge for more testing could be quite unpleasant.

Do check out the Newbie thread at the top of the Coping page. That will give you quite a bit of info. 

Ask any other questions you need to and I hope you feel better soon.