Posted 21 December 2012 - 09:53 PM
I'm new to the forums and new to Celiac. I was diagnosed a couple weeks ago, by chance actually. I learned through blood tests and an ultrasound that I have Hashimoto's thyroiditis and while at the endocrinologist, she saw that I was also B-12 deficient. She said she suspected Celiac (apparently many with Hashimoto's have celiac) and ordered another round of bloodwork. All the tests came back indicating Celiac. I really do not have symptoms of it though. She wants me to go gluten-free but said I do not need to see a gastroenterologist or nutritionist, nor does she think I need biopsy of my small intestine. My general practicitioner thinks I should though. Which should I listen to? I'm not keen on the idea of a biopsy and am struggling with the gluten free diet, so a nutritionist would probably be helpful. Also, if I don't have many symptoms (occasional bloating, gas) is there much damage being done when I eat gluten? (I'm sure there has to be some b/c of the B-12 deficiency).
Also, I get the dermitis herpetiformis rash occasionally, but always assumed it was a reaction to a new lotion, etc. I did not realize what it was until I was researching Celiac, saw pics of it, and thought "Wow! I get that rash!" lol
Thanks for any input!
Posted 22 December 2012 - 02:24 AM
Yes, some of the lucky ones (or unlucky depending on how you look at it) do not have severe symptoms to indicate that they should not eat gluten. Nevertheless, if you are celiac it is still doing its damage, witness your Hashimoto's and nutrient (B-12) deficiency, since it is a disease of malabsorption.
Whether or not you have a biopsy is entirely up to you. You have bloating gas, the thyroid problem, the nutrient problem, and DH, and if you continued to eat gluten who knows what other problems you might develop (the possibilities are endless but I would think those are enough ). Doctors always like the biopsy because it has always been the "gold standard" of celiac diagnosis and confirms the blood work. However, some celiacs actually have negative biopsies yet still have the disease. And some with positive biopsies have negative blood work. So it's a bit of a crap shoot. If you feel you can stick with the diet as you are diagnosed now, and do not need the biopsy for your doctor to certify you as celiac should you need the designation in the future, I would personally not bother with it. Others would say go ahead with it because you may find something else, just as you accidentally found celiac. But since you do not seem to have many GI symtoms it probably is not necessary. If your insurance will cover it it is really not a big deal test and could put your mind to rest and/or give you some indication of the amount of damage you have (to make a believer out of you )
As for adjusting to the diet, read the Newbie 101 thread and do some other reading on here about deglutenizinng, avoiding gluten traps, etc. If you still feel you need a nutritionist then get a recommendation for one who is familiar with celiac disease. If they are not they are not going to be of much help to you.
Best wishes for your new gluten free lifestyle.
"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein
"Life is not weathering the storm; it is learning to dance in the rain"
"Whatever the question, the answer is always chocolate." Nigella Lawson
Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose
Celiac.com - Celiac Disease Board Moderator
Posted 22 December 2012 - 04:40 AM
Posted 22 December 2012 - 08:56 AM
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul
Posted 22 December 2012 - 11:16 AM
I would say that if the bloodwork came back indicating celiac, especially with the other problems you have, it sounds like you DO have it. Please, take it seriously. A nutritionist MIGHT help, but you will also get great info here on how to control your diet. It isn't easy at first, but after a while it just becomes second nature. We can help you.
Posted 22 December 2012 - 07:20 PM
Posted 23 December 2012 - 08:29 AM
It is important to be totally gluten-free to get the full benefit of the diet. If you are consuming gluten, you will have a state of inflammation in your body which could cause other autoimmune diseases to appear... it could have caused your hashimoto's to appear. I have hashis and ITP which I think could have been caused by celiac disease, or at least caused to manifest earlier than it might have otherwise.
You might be pleasantly surprised by improved health in areas that you don't realize are affected by gluten. i have GI symptoms, they weren't extreme but they were annoying, and those cleared up pretty quick. I was happily surprised when my migraines disappeared though, up until my diagnosis, I was having migraines about half of the time... it's lovely to have those gone.
Best wishes to you.
"Acceptance is the key to happiness."
ITP - 1993
Celiac - June, 2012
Hashimoto's - August, 2012
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