OT Possible Celiac Disease

7 Replies
Kara H. - January 20

Anybody familiar with Celiac Disease? I have been having unexplained fatigue since about 8wks pp and tingling in my feet. I started having nausea and even more tiredness. My family doctor moved and I couldn't get an appointment with a MD for like two months so I saw the nurse pract_tioner at the office. She said I was a tired mommy after talking to me for literally 2-3 minutes. I politely explained to her that Max had been sleeping thru the night since 8 wks and sleep was not the problem. I told her that I had not had a proper physical in about 5 years and she said I didn't need blood work since I just needed a nap. This all happended the week after thanksgiving. I was so mad when I left. I NEVER go to the doctor. My old doctor knew that if I showed up, I either had a raging bladder infection or pneumonia. This nurse acted like I was some whiney new mom wanting attention. I decided then that I needed a new doctor, but I just got too busy with the holidays. The day after Christmas I went to go donate blood and got deferred because my hematicrit was way low. A few days after new years, my hands started tingling and going numb. To the point that I could not finish a haircut at work. Very scary! I also was experiencing some dizziness and lightheadedness. I found an internalist who was accepting new patients. I saw her friday. She really freaked me out. She said that if she had to make an educated guess, she would say that it is probably celiacs disease since I am showing signs anemia, B12, D, and folate deficiency, I have a history of IBS type symptoms, and my sister has a wheat sensativity. But she said that she would also have to rule out MS, lymphoma, and a couple of other neurological disorders. Yikes! While I love my bread, I think it sounds the least scary. I go back on Tuesday for a fasting blood draw as the first step. I go in on thursday for the blood results and she said she would definitely be scheduling more test then based on the blood work. I have actually been in a little bit of shock the last few days. I assumed I would just be given some iron and told I had carple tunnel, so this is all a little overwhelming. I knew I felt bad, but I had no idea I had visible signs of malnutrition. Anybody familiar with Celiac? Am I going to be able to get gluten free baked goods?


Nerdy Girl - January 21

My aunt has it, but it was not diagnosed until she was in her 50's. She had various health problems her whole life, but the celiac was never diagnosed. Now that she has been diagnosed, so many of her issues now make sense. The lining of her intestines is so damaged that she is not able to asorb nutrients from food, so she has basically been malnourished for decades. You are lucky that they diagnose this early. You will have to buy a lot of special kinds of foods - it's a major lifestyle change. But there are still a lot of healthy tasty things you can eat, including gluten free baked goods. Check your local health food store because I am sure they have a gluten-free section.


Kara H. - January 21

Honestly, I probably wouldn't have gone back to the doctor if I hadn't started losing feelng in my hands. That really scared me that I couldn't do my job. I remember constantly being sick to my stomach as a kid. Mom always said that I was just a nervous/stressed kid. If it turns out to be celiac's it would explain a lot for me too...


San - January 21

HI Kara. My dad was diagnosed with celiacs about 2 years ago. Feel free to email me and I can pa__s on what I know about the disease- srees1at htocdot com . Stupid forum not allowing email addresses


Kara H. - January 21

Thanks san - did they tell you that all blood relatives should be checked since it is heriditary even if they don't have symptoms? I am getting ready to crawl into bed, but I will definitely email you tomorrow! Thanks for your help! :)


olivia - January 21

my neice was diagnosed at age 3, she is 5 now and gluten free for about 2 years. it is a lifestyle change, but try to wait for a diagnosis before getting too worried. also make sure you keep wheat in your diet until all the testing is finished. there is a large support network for celiacs so hang in there and ask San lots of questions if you are diagnosed. you will have a biopsy if the bloodwork is all positive to confirm a diagnosis. you can have gluten free baked goods. they taste a little different but not bad! good luck.


Kara H. - January 21

I'm not as much worried about the celiacs as I am about the fact that she could just look at me and tell there were health issues going on. And of course the numbness is concerning. I pa__sed MOST of the neurological funtion test in her office (no loss of motor skills and such). I had not been able to feel her touch end of two of my toes though. We are hoping that is just B12 defiency and not something more serious going on neurologically. She didn't really tell me she had planned test wise after the bloodwork, but I figured she would be doing something invasive in regard to confirming the celiacs. When they biopsy, do they go "up" your digestive tract, "down" your stomach, or thru your abdomen from the outside? I am trying not to alter my diet at all so I don't skew the bloodwork from my state when I walked in there on Friday. Thanks for all the good info!


spamanda - January 21

Kara I have two good friends with celiac's. It is bad but not as awful as it initially may sound. One has a much worse version of it. There are all kinds of things available to eat and all sorts of recipes online. If it is celiac's you'll be surprised at home much you can actually make to eat. I hope all your tests go well, good luck!



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