cr729Participantcr729 March 2, 2016 at 11:33 am #14235
I was diagnosed with celiac disease in 2006, when I was 17 years old. Now I am 26 years old and would say I have been very strictly gluten free for at least the last 8 years. I still have stomach aches daily, all different types, and I am almost always exhausted and suffering. In the last couple of years, in a quest to understand why I was still so sick, I underwent an endoscopy, a colonoscopy, and various other tests. Every test said I was ‘fine’. I have trouble making it through each day and cannot work a full work week anymore. I was wondering if there is anyone out there who finds that eating gluten free has not completely relieved their symptoms. I am so tired and distraught and cannot understand why I am sick every day. Any advice or guidance is appreciated.
tanstaaflParticipanttanstaafl April 11, 2016 at 11:19 pm #14422
I haven’t been gluten free for very long, but I have a friend who was diagnosed in ’08. She didn’t see much improvement until around 2012 when her doctor tested her for a thyroid condition (Hashimoto’s Thyroiditis). Apparently celiacs and hyperthyroid have a high comorbidity (if you have one, you’re a lot more likely to have another). A lot of doctors overlook it since they focus on the endoscopy (and if you get better without gluten, who cares?). Good news is you can rule it out with a simple blood test, no invasive/expensive procedure necessary!
wheatfreeeeeParticipantwheatfreeeee September 15, 2016 at 1:24 pm #15340
I just wanted to clarify Tanstaafl said about Hashimoto’s. Hashimoto’s is an autoimmune attack on the thyroid. It can cause bouts of hyperthyroidism, but overall, leads to hypothyroidism as it damages the thyroid. It is not uncommon among celiacs. Grave’s disease is a thyroid autoimmune disease that causes hyperthyroidism.
Personally, I find that a glutening directly affects my thyroid. I get a pain in my thyroid, a fast heart rate, a sense of despair. Then for weeks after I feel hypothyroid- weight gain, fatigue, slow digestion, ravenous appetite, breast pain, flulike aches, neck pains, confusion.
Hypothyroidism can affect the digestion, because it impairs your ability to secrete stomach acid, which makes digestion harder and causes nausea/heartburn, and it slows gut motility, leading to constipation, bacterial overgrowth, and poor absorption.
When I was in my late 20s I felt exactly like OP. I was always nauseous, bloated, exhausted, and ravenously hungry. I had mixed diarrhea and constipation and a great deal of varied stomach pains. I was absolutely worn out and began to notice changes in skin, hair, nails, and circulation.
However, I had not been diagnosed celiac. I was “gluten-free” on my own, but of course cross-contaminated.
I got a new doctor and the first thing I had to do was get rid of cross-contamination. Cleaned the kitchen, new appliances, everything.
Next, my doctor put me on a short course of antibiotics for bacterial overgrowth. I’m not entirely sure this was necessary, because I think diet change is more effective in controlling this for me. I find the bacterial overgrowth rivals the pain of celiac. It’s triggered in me by too many carbs, sugar, fruit, processed food, not enough vegetable fiber. I take a probiotic too.
Next, my doctor tested me for lactose intolerance, and I was unequivocally positive. I have to watch for dairy in any form. Even if it is a minor ingredient it will cause pain. I had to keep up the lactose free for several weeks before the pain improved.
Then, as I improved, I set about eliminating foods on my own. When you have constant symptoms, it’s hard to identify triggers. When you feel better, it’s easier to narrow down the culprits. Soy is an absolute no for me. So are grains and legumes in general. Sugar and processed food brings many symptoms right back, and things snowball. I was very sensitive to fruit for a while.
Once I figured out the ok foods, I pared my diet right down for several months. Basically, I ate organic grass fed meats, wild fish, vegetables, olive oil, avocado, rice, and potatoes. I ate very simple preparations because I had to prepare everything. My digestive pain got so much better, no bloating or gas, normal bms. I had energy to get up and move and my blood sugar stabilized and anemia improved.
Now I’m in the stage of adding things back like fruit and nuts. Sometimes, it triggers bloating or inflammation again, so it’s not perfect.
I have Hashimoto’s but apparently am not ready for medication, so my doctor has me on iodine because I have been so deficient. That helps with the hypothyroid.
I’m sorry this is really long, I hope it’s helpful. I think the book from the Celiac Center at Beth Israel Deaconess is good for the next steps for those who still feel sick while gf. In terms of a diet to support gut health, I like Dr. Art Ayers’s blog. I don’t think he’s gimmicky the way so many in functional medicine are.
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