Horrible experience with the doctor..

[Haveaniceday]

Went to the doctor as I had glutened myself after 6 weeks successfully gluten free, had all of the gastro problems and hives, but worst of all though was the neurological symptoms, which were the reason I originally presented to get tested. Numb face, feeling drugged, slurring speech, weakness. Was told that "there is no way one time being glutened would damage my vili enough to cause deficiencies, therefore my symptoms are just.."anxiety", then went on to explain that all celiac is is damage to the vili affecting absorption. Then looked at my rash (only ever present when glutened) and said it was probably a fungal infection. I'm Marsh 3b. Last doctor put me on steroids 3 times because my reactions are so bad. I never once presented with gastro issues, prior to diagnosis it was "my face is numb, I'm forgetting everything, my joints hurt, and I feel foggy". My specialist went into great detail with me about neurological symptoms, and the prevalence, and that it was happening to me. Feels awful to have another regular Dr undermine all of that (despite me reiterating what the specialist had said".

 

Feel so awful about this experience, on top of being really unwell, and not being prescribed anything to help me get through it.

 

/vent

[Scott Adams]

I think it's time to find a new doctor. Celiacs have been mistreated this way for the entire time I've operated this site, and this board is filled with stories similar to yours.

Regarding the cross-contamination you experienced, given that you are so sensitive you may be interested in a post I just made on this thread:

 

[frieze]

On 12/23/2020 at 3:16 AM, Haveaniceday said:

Went to the doctor as I had glutened myself after 6 weeks successfully gluten free, had all of the gastro problems and hives, but worst of all though was the neurological symptoms, which were the reason I originally presented to get tested. Numb face, feeling drugged, slurring speech, weakness. Was told that "there is no way one time being glutened would damage my vili enough to cause deficiencies, therefore my symptoms are just.."anxiety", then went on to explain that all celiac is is damage to the vili affecting absorption. Then looked at my rash (only ever present when glutened) and said it was probably a fungal infection. I'm Marsh 3b. Last doctor put me on steroids 3 times because my reactions are so bad. I never once presented with gastro issues, prior to diagnosis it was "my face is numb, I'm forgetting everything, my joints hurt, and I feel foggy". My specialist went into great detail with me about neurological symptoms, and the prevalence, and that it was happening to me. Feels awful to have another regular Dr undermine all of that (despite me reiterating what the specialist had said".

 

Feel so awful about this experience, on top of being really unwell, and not being prescribed anything to help me get through it.

 

/vent

Report the doctor to his governing body.

[Juca]

Time to change doctors.

I went through quite a few family doctors (and took about 2 years) until I found one that could diagnose me.  A doctor that takes you seriously and is able to diagnose celiac is a keeper. He is better than most but still has a limited understanding of the disease, so I stick with him for general complaints. For celiacs, I am now followed by gastroenterologist specialized in non responsive celiac disease who has a good understanding of the scope of symptoms this disease has. Not all gastro doctors do. That helped a lot. 

But best of all is my nutritionist, who is a celiac herself, and all the people in this forum. They understand you the best and give solid advice. They will help you advocate for yourself. I am afraid most people in the medical community won't ever fully understand what you are going through.