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Introduction And Some Questions


tallfran

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tallfran Apprentice

Hi Everyone,

I'm a 61 year old female who is almost positive that I have Celiac Disease. I've been blaming my gastic problems on other things for a long time -- mainly on Lactose and Fat. I don't have D per se, as in multiple times per day, but after nearly any meal, I have to get to the bathroom within 20 minutes or so for an exlosive, watery stool.

I saw the doctor a couple of months ago for extreme fatigue and weight loss. She did a CBC, blood sugar, and thyroid panel. All were pretty much normal.

I'm just under 6 feet in height and my current weight is 145, which is a little low. I did a long distance hike in 2006 and my weight at that time dropped from 158 to 141, so I have regained a little of the weight I lost hiking, but not as much as I would like. I got up to about 150, and then started losing again.

My parents are both deceased now, but I suspect they both had celiac as well. Dad was Type 1 diabetic, Mom had lots of gastric complaints, and both were quite thin. I have one sister, who has had a thyroidectomy, not certain of the reason.

My medical history includes severe headaches, GERD, peripheral neuropathy, ADD, removal of gall bladder, multiple canker sores, polymyalgia rheumatica, poor balance, extremely poor night vision, optic migraine, arthritis, and (surprise, surprise) depression.

I just got back from Walmart where I grocery shopped, looking for gluten-free items. I did find gluten-free pastas and soy sauce. They even had the gluten-free beer! I'm not much of a beer drinker, but I did buy a six-pack and it tastes like any other beer to me. I was told they had gluten-free bread, but they were out of it. I don't plan on going gluten-free until after my tests, but thought I'd start getting ready because even if the tests are negative, I want to try the gluten free diet to see if it helps.

Any responses or suggestions highly welcome!

Fran


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gfpaperdoll Rookie

welcome Fran!!! I think all your symptoms point to a gluten problem. I think you are very smart to go gluten free. What type of tests are you going to get?

I am 60 & have never felt younger or healthier !!!!

tallfran Apprentice

Thanks for your reply!

She doesn't know why I made the appointment yet; I just spoke with the receptionist. I plan to take my copy of Peter Green's book, just in case she knows nothing about celiac, and I'll request the full celiac panel. I also hope she'll refer me to a GI doc so that if the blood comes back positive, I won't lose too much time before the biopsy. I don't know if my insurance will pay for the biopsy if the blood tests come back negative...

I do need to load up on gluten. I've never been much of a bread eater, except specialty breads like San Francisco sourdough, or the Italian bread at Carrabba's that you dip in the Olive Oil. I do love pasta though, and biscuits and gravy. :(

Fran

buffettbride Enthusiast

Fran,

I hope you finally find out what has been ailing you. Perhaps you could get your PCP to refer you straight to a GI for the blood and endoscopy tests? Might have a better chance of running them concurrently. With my daughter, they drew blood and did the endoscopy on the same day. We got the results on the same day, and were complimentary in terms of diagnosing her as Celiac.

Either way, after the tests, you can try gluten-free to see if it makes you feel better! You will find a wealth of information here--this site is really the best resource I've found.

Take care!

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    • trents
      You might consider asking for a referral to a RD (Registered Dietician) to help with food choices and planning a diet. Even apart from any gluten issues, you will likely find there are some foods you need to avoid because of the shorter bowel but you may also find that your system may make adjustments over time and that symptoms may improve.
    • Ello
      I wish Dr’s would have these discussions with their patients. So frustrating but will continue to do research. Absolutely love this website. I will post any updates on my testing and results.  Thank you
    • trents
      Losing 12" of your small bowel is going to present challenges for you in nutritional uptake because you are losing a significant amount of nutritional absorption surface area. You will need to focus on consuming foods that are nutritionally dense and also probably look at some good supplements. If indeed you are having issues with gluten you will need to educate yourself as to how gluten is hidden in the food supply. There's more to it than just avoiding the major sources of gluten like bread and pasta. It is hidden in so many things you would never expect to find it in like canned tomato soup and soy sauce just to name a few. It can be in pills and medications.  Also, your "yellow diarrhea, constipation and bloating" though these are classic signs of a gluten disorder, could also be related to the post surgical shorter length of your small bowel causing incomplete processing/digestion of food.
    • Ello
      Yes this information helps. I will continue to be pro active with this issues I am having. More testing to be done. Thank you so much for your response. 
    • trents
      There are two gluten-related disorders that share many of the same symptoms but differ in nature from each other. One is known as celiac disease or "gluten intolerance". By nature, it is an autoimmune disorder, meaning the ingestion of gluten triggers the body to attack it's own tissues, specifically the lining of the small bowel. This attack causes inflammation and produces antibodies that can be detected in the blood by specific tests like the TTG-IGA test you had. Over time, if gluten is not withheld, this inflammation can cause severe damage to the lining of the small bowel and even result in nutrient deficiency related health issues since the small bowel lining is organ where all the nutrition found in our food is absorbed.  The other is NCGS (Non Celiac Gluten Sensitivity or just "gluten sensitivity") which we know less about and are unsure of the exact mechanism of action. It is not an autoimmune disorder and unlike celiac disease it does not damage the lining of the small bowel, though, like celiac disease, it can cause GI distress and it can also do other kinds of damage to the body. It is thought to be more common than celiac disease. Currently, we cannot test for NCGS. Celiac disease must first be ruled out to arrive at a diagnosis of NCGS. Both disorders require elimination of gluten from the diet.  Either of these disorders can find their onset at any stage of life. We know that celiac disease has a genetic component but the genes are inactive until awakened by some stress event. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% develop active celiac disease. The incidence of NCGS is thought to be considerably higher. I hope this helps.
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