Good news but still know gluten is bad for me

[Awol cast iron stomach]

Well I went to rheumatologist as next step in my long journey since glutening in March 2016. My celiac diagnosed cousin suggested it as a next step for me based on my months of issues since glutened. In a nutshell can't be ruled in by testing results my own body's symptoms tells me I can't be ruled out.

To recap I have had GI issues a lifetime diagnosed IBS 18 years ago and went gluten-free 3 1/2 yrs ago as my multi system symptoms got increasingly frightening but responded to removing G. When diagnosed as IBS years back I was told I would have to figure out what I could eat / not eat and I'm still trying to figure that one out. It appears to be gluten, but once glutened my sensitive system attacks many foods I attempt to eat after until I eat very plain foods and time heals. Time meaning months.

So the results show no autoimmune results and no antibodies based on blood work testing for gluten which would make sense since I am gluten-free. However the issues flare  if gluten sneaks in.

While I was glad to hear no diagnosis of an autoimmune disorder, really I'm relieved. However not sure if I should pursue this path or just go back to what works for me .  I would however remain Gluten-Free because my body tells me so.

 We went on vacation and I had not eaten out since March 2016 due to glutening. I researched the local support group website of the town prior to booking vacation to find gluten-free restaurants those members go to. Well the one  gets passing grade, the other not.  Shortly after eating my gluten-free/DF meal at one place I felt my joints ache and my right arm began to tingle then go numb all the places except joint, and my sinus pressure ramped up, then Gi began. So my husband and I knew I got CC. We also suspect because the wait staff admitted pepperoni touched my veggie gluten-free/DF pizza (pepperoni was on another gluten-free/ DF pizza at our table. ) I said I am not a vegetarian gluten is a problem .  My food can not touch gluten. Not certain the whole story was conveyed truthfully to me in hindsight. Since clearly I was cc.

So do I see the medical Group I have set up for September ? An immunologist in allergy/food intolerance, GI, and nutritionist. I kept my food diary which I didn't need to as much as I recovered I was able to eat more foods. The rheumatologist didn't just send me on my way, I return in Feb. Do I jump off this train or is this par for the course celiac/ NCGS path in medical land? If I'm NCGS anyways there is no test currently correct? So what's the point

Do I become a drop out and a hermit that never eats anywhere but home that's what signs point to. After cc we ate our own simple foods in our hotel room and it was safe.

thoughts ? 

 

[Jmg]

On 8/20/2016 at 0:05 AM, Awol cast iron stomach said:

So do I see the medical Group I have set up for September ? An immunologist in allergy/food intolerance, GI, and nutritionist. I kept my food diary which I didn't need to as much as I recovered I was able to eat more foods. The rheumatologist didn't just send me on my way, I return in Feb. Do I jump off this train or is this par for the course celiac/ NCGS path in medical land? If I'm NCGS anyways there is no test currently correct? So what's the point

Do I become a drop out and a hermit that never eats anywhere but home that's what signs point to. After cc we ate our own simple foods in our hotel room and it was safe.

thoughts ? 

I had rheumatic aches which have gone since my diet change. It sound like yours isn't improving so maybe you should follow that one up with the specialist in Feb. I think you have to be careful that in automatically suspecting gluten you don't miss something else. The only snag is that you may be paying for a needless consult. I guess you've time between now and then to see if you think you need to continue?

As for the second point. I think you have to be brave and make sure you continue to live as normal a life as possible. There are some inspiring people on here who do just that with far worse problems than I face, so I tend to draw some inspiration from them. 

In regard to cross contamination. Have you looked at some of the heal your gut sites? I got into making bone broths and probiotic sauerkraut. Maybe you could strengthen the gut barrier and make yourself less likely to suffer cross contamination or reactions from other foods?