Seeking Advice!

A

amberguillen

New member
AH HA!! Like me you have the trifecta - juvenile arthritis, celiac and autoimmune thyroid disease. http://www.ncbi.nlm.nih.gov/pubmed/15695302

It can take up to two years for your intestines to heal from celiac disease, so I wouldn't worry about refractory just yet. Gastroparesis is a common side effect of celiac and should improve as your intestine heals. You can have gastritis (red, acidic stomach, often a precursor to ulcer) without reflux symptoms. Did they test you for H. Pylori?

Celiac can cause migraine headaches, amoung other neurological problems, and considering how beat up your small intestine is right now, I wouldn't be surprised if that's it.

The 98.6 "average" body temperature is an urban myth. A slightly higher or lower temp is perfectly normal. My "average" is usually around 96.7 ~ when I was a kid my mother used to tell the school nurse to send me home if I had a "normal temp", 'cause for me 98.6 was a fever!

I would seek a second opinion from another endocrinologist. Alot of your mystery symptoms sound like you're bouncing back and forth from hypo-thyroid to hyper-thyroid. When was your last thyroid ultrasound?
 
Hello Amms, :) the outlook for celiac disease is that symptoms do clear up once removal of all gluten is achieved. There is no limit to the amount of meat, fish, eggs, dairy products, vegetable, fruit, rice and corn but you must be wary of all foods containing wheat, rye, barley and oats. Check very closely all labels on food even ice cream, salad dressings, condiments and a lot of other foods one wouldn't expect gluten. I hope you start to feel better soon and am sorry that you are so under. You do not have any diagnosis of the *C* so now you can relax. Re-evaluate what you are eating that may contain gluten. Good luck!
 
Thank you. I have met with 2 dieticians and also have lots of books and resources that I consult. I basically only eat foods that say gluten-free on them, or, if uncertain, I always call the manufacturer. At the very beginning I was glutened by accident once or twice, but I know for certain that at least for 3 or 4 months now I've been totally GF. At least, it would seem like it. Yes, no *c* diagosis is good, but of course what my neurologist said about it not necessarily "showing up" right away is scary. So is the thought that if I DO have Refractory it almost always advances to that. But for right now I praise God every day that it has NOT gotten to that point and try to stay optimistic that it WON'T. I do all I can including eating foods very high in antioxidants, etc. I think that I will get better soon, I'm not sure why it is taking me more time than most (that's why I wonder about some other underlying condition - thyroid or another autoimmune thing, etc...who knows??) But hopefully all of the puzzle pieces will come together soon. I really appreciate your reply, and as weird as it sounds I actually kind of hope that maybe I have been inadvertantly glutened here and there for at least then it would EXPLAIN my slow recovery! Thanks for writing :) God bless & TGIF! :)
 
Thank you, but my Rheumatologist has tested me for Lyme's Disease and West Nile Virus. Both were negative. I was bit by a tick as a child but not a deer tick. I've been tested for it 2x in the past 10 years, the most recent being over the summer, so I don't think it is that. Although, I do a lot of research and educate myself, so it is odd b/c as you'd mentioned I do have a ton of the symptoms! Thanks anyway for the suggestion!! God Bless & TGIF :)
 
Thanks! I'm hanging in there, getting tons of tests done, seeking 2nd opinions, and even trying natural/alternative therapies. I am trying to stay strong and positive and know that God will get me thru this all. It would be hard for anyone but I hate being so young and feeling like this! We will see how my thyroid tests and QSART tests come out. I think I worried myself a lot b/c on top of everything I'd mentioned in the post, 2 things I forgot to mention were that I bruise very easily and they take a long time to go away, and also when all the symptoms started I'd found a very small (b.b. sized) lump on my face near my eye socket (like on a sinus I think) but my PCP and dermatologist said it is nothing. But things like that worry you, ya know, then all the stuff that comes along w/ Celiac coupled w/ another autoimmune disease -- more than anything it is frustrating and overwhelming! I'm past "scared" and now just annoyed - I want to get better, haha!!! Thank you so much for your reply and your kind words, though. It is much appreciated :) God Bless & TGIF! :)
 
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