My Journey

[Not sure of anything]

A little over two years ago I started to get ocassional numbness in the feet and legs, bothersome at first then it all came on with a vengence,, after testing of everything,, I was basically told its all in your head,, then after three sinus surgerys in which the culture came back allergic fungal sinusitis, and after the fouth it grew a rare bacteria, I was told to see a immunologist who after blood work and a pneumvax challenge told me i was Immune deficient, and was to start IVIG treatments,, during all this testing,, My stoamch would act up,, the food would feel like it was sliding through it and I had ocassional constipation along with diarehha,, I pretty much thought it was stress related,, then out of the blue my eyes dried up,, my mouth dried up and I wondered now whats going on,, after refusing o see any more local doctors i was sent to Pittsburgh to see a rheummy and had a consut with the top rheummy in Pittsburgh,, after listening to my story and not showing the antibodies to Sjygrons syndrome,, he said basicaly,, I believe you have it,, not all people have the antibody,, and even alip biopsy might not show it,, I had hte lip biopsy which just showed fibrosis,, so they have me on Plaquinel,, steroids when needed,, Lyrica,, and a afew other meds,, All this time the stomach problems continued to the point whee I am now,, when I eat I burp constantly,, it feels like the food gets stuck near my breast bone,, my stomach just sems to spasm in waves,, my stool is dark and oily, its just a mess is what it is,, the joint pain is unbearable,, and I dont know if its from the Sjygrons, or if I have celiac,, I had a endoscope and a colonostomy this spring,, and it showed gastritis and some erosion, some benign polyps were removed, I guess my question is this,, does anyone here have other autoimmune diseases to go along with celiac,, and if you dod go gluten free,, how soon did you show improvement,, I;m willing to just try it to see if it helps,, I see a gastro on the 20th,, and will be sure to ask him about that,, and thnk you for reading my story,, I was praying that one autoimmune diseae wouldnt lead to anothre but I have my suspicion that it is,,

[ShayFL]

Your suspicion is correct. Autoimmune diseases tend to cluster. If you have one you are much more likely to have another. In my family it is hashimotos (thyroid) and psoriasis (skin).

So sorry to hear of your health issues. How awful for you to suffer so much.

Your endoscopy showed "some erosion" which might mean villi atrophy which would indicate Celiac. Have you done a complete Celiac panel INCLUDING IgA. They said you were immuno deficient so they may have tested your TOTAL IgA.

Do you have copies of ALL of your lab work and endoscopy reports? It is your legal right to have them. If you dont, request copies. Let us know exactly what they tested and the results and we can help you as much as we can.

It certainly would not hurt at this point to try a gluten-free diet. It is a healthy diet. But if you want Celiac tests, then you need to keep eating it until AFTER all of the testing is complete so they will be accurate.

[Not sure of anything]

Just happen to have my levels that were taken back in January,, IGM 47 (48-271)

Igg 945 (694-1618) subclass 2 deficiency

IGA 228 (81-463)

Nw this is from back in January, I have no idea wht they are now

[Not sure of anything]

What about protein,, is that any indication of celiac,, it was 6.6 range is 6.2-8.3

[leadmeastray88]

I would suggest having the complete panel re-done, except add the tissue transglutaminese (tTG) which is much more specific for Celiac, as well as the total IgA which tests for IgA deficiency. Your blood can change in an instant so you should definitely have them re-done.

Not sure about your protein question, maybe someone else here can help.