Posted 22 March 2012 - 06:33 PM
Posted 22 March 2012 - 06:53 PM
It sounds like you have had celiac disease for many years. You are recently diagnosed (did I correctly understand 3 weeks?).
Your body has sustained considerable damage during the time that you had celiac disease, but were not aware, and did not follow the gluten-free diet.
It will take time to heal your body. Months at least. In long-term cases like this, it can be two or three years. While your body is healing, it is still damaged. You may experience random reactions to food that have absolutely nothing to do with eating gluten. You just haven't healed enough. Spicy foods, fatty foods, dairy foods--all of these can cause a reaction during the healing phase. Don't assume that every reaction is caused by gluten, although it is a possibility.
Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000.
Type 1 (autoimmune) diabetes diagnosed in March 1986
Markham, Ontario (borders on Toronto)
Celiac.com - Celiac Disease Board Moderator
Posted 22 March 2012 - 07:28 PM
The information you provided was very helpful to me. I can relax now knowing that these reactions aren't from gluten alone. It was quite alarming and stressful to say the least. This has been very helpful. Thanks very much once again.
Posted 22 March 2012 - 07:33 PM
"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 March 2012 - 10:13 PM
Posted 23 March 2012 - 01:56 AM
Posted 23 March 2012 - 02:48 AM
Posted 23 March 2012 - 03:54 AM
In our extended family we had what we thought was a predisposition to lactose intolerance and various other allergies. We also have thyroid problems in the family too. It took 20-30 years for all those lactose-intolerant people to be diagnosed as celiac (all of them without exception!). Please encourage your daughters to be tested too. If your diagnosis is confirmed, which seems likely, you may wish to remind doctors that even if your childrens' blood tests come back negative, they ought to nevertheless consider proceeding to endoscopy, given their family history and their lactose intolerance. Have your doctors also planned a bone scan for you to check for osteoporosis? This is very common in those who have been undiagnosed for a long time.
Thank you UK Gail. I have had my suspicions. My oldest daughter has a thyroid condition and was being treated but was allergic to the medication. I will follow up with her. Your information is most valuable and brings up some very important points which may help my family greatly. Thank you. I will encourage them to be tested. My doctor is not qualified to really help me through this process and I need to find another I believe at this point. Most of what I have discovered has been through other professionals and brought to her attention sadly. Thanks again for your very valued information.
Posted 23 March 2012 - 04:25 AM
I would echo all the wonderful advice you have received already--especially in regards to giving your body time to heal. For those of us who go long Un- Dxed, it may take years to heal. Do not be discouraged by that thought, though--it gets better and better!
You may wish to avoid dairy and soy for now. Lactase, which is the enzyme that breaks down the sugar lactose, is produced in the tip of the villi. When the villi get blunted in celiac disease, sometimes the ability to digest lactose is decreased and you can become lactose intolerant. This may cause bloating, stomach cramps, diarrhea, etc. After you go gluten-free, the villi will heal and most people are able to tolerate dairy foods again.
I find it no coincidence that family members are "lactose intolerant" and have thyroid issues. These conditions often go hand-in-hand with gluten intolerance/celiac. My many extended family members have those issues, too! For what it is worth, my hypo/hyperthyroid fluctuations and lactose intolerance and long time GERD and "IBS"--have all resolved. It was the celiac/gluten all along.
Soy affects estrogen levels and if you are concerned about calcium intake, try So Delicious Coconut milk. It has MORE calcium than cow's milk, should be easily tolerated and perhaps in time, you can add dairy back into your diet without suffering any symptoms.
I use it--and the coconut creamer and "ice creams". Very tasty! I now tolerate cheese on occasion and half and half in my coffee and yesterday, I ate Haagen das ICE CREAM (yaay!)
Best wishes and I hope you start to feel better soon! Keep us posted!
"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir
"The strongest of all warriors are these two - time and patience." Leo Tolstoy
"If you want to lift yourself up, lift up someone else" Booker T. Washington
“If idiots could fly, the sky would be like an airport.”― Laura Davenport
"Do or do not. There is no try. "- Yoda.
"LTES" Gem 2014
Misdiagnosed for 25+ years; Finally Diagnosed with Celiac 11/01/10. Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
Posted 23 March 2012 - 05:39 AM
Posted 23 March 2012 - 11:01 AM
Posted 23 March 2012 - 02:40 PM
Posted 25 March 2012 - 07:19 AM
Sorry, there are no quick fixes. When I first started out, I quickly found that plain, homemade soups (with meat broth or stock and veggies) were the most soothing thing to eat. For a while I couldn't handle anything fatty, and just stuck to soups, slow cooked plain casseroles, and grilled meat and boiled veggies. Go very easy on gluten free baked goods until you feel better. For me digestive enzymes helped a lot. Probiotics were also a big help. Maybe some multivitamins too if you are deficient in anything, which is likely, but don't add too many supplements to your diet in one go, do it in stages to give your body time to get used to them.
This was the same for me too. Slow and simple is the way to go when you are dealing with a long term sick body like ours.
Posted 25 March 2012 - 07:25 AM
Posted 25 March 2012 - 06:35 PM
Good luck in figuring out your puzzle! It has been quite a process for our family, and it certainly has helped us to reach out to support groups as we have tried to decipher our celiac and allergy issues.
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