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Putting The Pieces Together,waiting On Biopsy

mamasaidso

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mamasaidso Apprentice
mamasaidso
Posted

My daughter had a positive biopsy and negative blood panel. I recently had a positive blood panel.

My Endomysial Antibody IgA, TTG was 71 and flagged as abnormal high.

I am waiting on results of biopsy. The gastro doc said she didn't see signs of celiac, but we'll see what biopsy says. My daughter's doctor wasn't even looking for celiac but took a couple biopsies where it was irritated and biopsy showed almost totally flat villi.

We have been gluten-free almost three weeks. She has a harder time of it, being 21, and eating out a lot. There have been birthday celebrations and limited menus when she eats out with her boyfriend. She is getting there and he is supportive.

Even if my biopsy come back inconclusive for celiac I will continue to stay gluten-free and my daughter will, too. I'm in process of getting lab orders for vitamin deficiencies test for both of us and wonder what to do next. Reading everything in sight and yesterday bought Celiac Disease, Hidden Epidemic. That book is awesome. He explains everything so clearly.

I think we are on a good path, but really a little stressed over what biopsy is going to show. Getting a few mixed signals from each doctor. But we know how we feel on diet, so that's what matters.

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Lisa Mentor
Lisa
Posted

You and your daughter are welcome to call this place home. :D

I love your user name. When my girls were young, my husband would travel MANY days a week. When he would come home, and tell them to do something, both girls would say "but momma says". So he ordered me a personalized license plate that says BTMAMASZ. :P

mamasaidso Apprentice
mamasaidso
Posted
  • Author

Thanks for the welcome and looking forward to getting through this with my new extended family.

My husband still travels quite a bit, but wasn't home much when kids were younger. We were trying to think of a screen name and he actually came up with it. I thought it was cute and accurate. :D

Love the license plate.

mamasaidso Apprentice
mamasaidso
Posted
  • Author

Well, the report from endoscopy came back positive for celiac. I am going have doctor give me an order to have vitamin levels tested. Wondering if that will help me figure out why I have constant tingling in arms and legs and balance issues. Also, the fatigue and muscle weakness is a problem and osteoporosis is on a fast pace. Have been putting off taking my Fosamax til tests came in. I was having stomach pain and didn't want to add to it. After reading on the drug and celiac, I'm glad I waited. It can cause problems and lower blood calcium. I'm going to be sure everything checks out before going on it again.

I was reading through Celiac Disease, Hidden Epidemic and the chapter on related autoimmune disease really got my attention. I think my father's side of family carries the celiac gene. I have an aunt and uncle with ideopathic cardiomyopathy. He has had a heart transplant and his sister is on a list for one. An aunt died with cardiomyopathy. I am encouraging them to get tested (without alarming them) and to have their children tested if their tests are positive. There has been a missing link to their heart problems and their inflammation problems.

Does anyone else have this is their family? I know I am starting to feel better, but I think it will take some time to completely heal. I want my daughter to have a healthy full life, as well.

Lisa Mentor
Lisa
Posted
Well, the report from endoscopy came back positive for celiac. I am going have doctor give me an order to have vitamin levels tested. Wondering if that will help me figure out why I have constant tingling in arms and legs and balance issues. Also, the fatigue and muscle weakness is a problem and osteoporosis is on a fast pace. Have been putting off taking my Fosamax til tests came in. I was having stomach pain and didn't want to add to it. After reading on the drug and celiac, I'm glad I waited. It can cause problems and lower blood calcium. I'm going to be sure everything checks out before going on it again.

I was reading through Celiac Disease, Hidden Epidemic and the chapter on related autoimmune disease really got my attention. I think my father's side of family carries the celiac gene. I have an aunt and uncle with ideopathic cardiomyopathy. He has had a heart transplant and his sister is on a list for one. An aunt died with cardiomyopathy. I am encouraging them to get tested (without alarming them) and to have their children tested if their tests are positive. There has been a missing link to their heart problems and their inflammation problems.

Does anyone else have this is their family? I know I am starting to feel better, but I think it will take some time to completely heal. I want my daughter to have a healthy full life, as well.

A good blood screening is a wonderful idea. I was low in folic acid and b-12 and that seems to be a frequent issue with celiacs.

I would suspect that the numbness and muscle weakness is due to peripheral neuropathy which has three causes, diabetes, alcohol abuse and other autoimmune issues. This can be reversed through supliments, expressly B-12.

My mothers family always has osteo isses, but my mother died when I was a small child. And every morning finds me with new aches and pains. This is my new medical adventure. My father had had stomach issues all his life and died from a second heart attach at 62. I suspect that the Celiac came from my fathers (Austrian) side.

It sounds like we have similar histories.

Oh... AND WELCOME TO THE CLUB. :D

ravenwoodglass Mentor
ravenwoodglass
Posted
Well, the report from endoscopy came back positive for celiac. I am going have doctor give me an order to have vitamin levels tested. Wondering if that will help me figure out why I have constant tingling in arms and legs and balance issues. Also, the fatigue and muscle weakness is a problem and osteoporosis is on a fast pace. Have been putting off taking my Fosamax til tests came in. I was having stomach pain and didn't want to add to it. After reading on the drug and celiac, I'm glad I waited. It can cause problems and lower blood calcium. I'm going to be sure everything checks out before going on it again.

I was reading through Celiac Disease, Hidden Epidemic and the chapter on related autoimmune disease really got my attention. I think my father's side of family carries the celiac gene. I have an aunt and uncle with ideopathic cardiomyopathy. He has had a heart transplant and his sister is on a list for one. An aunt died with cardiomyopathy. I am encouraging them to get tested (without alarming them) and to have their children tested if their tests are positive. There has been a missing link to their heart problems and their inflammation problems.

Does anyone else have this is their family? I know I am starting to feel better, but I think it will take some time to completely heal. I want my daughter to have a healthy full life, as well.

Welcome. When there is one celiac in the family there are for sure lots more. Many of them will of course be diagnosed with other things, after all celiac is not looked for much here.

I am with you with the Fosamax stuff, I will need a lot of dental work and possibly extractions and this drug was not worth the risk for me. My doctor told me to start a doing weight bearing excercises and up my calcium intake, that may help your bone density also.

You are going to want to get some sublingual B12, the sublingual is really important as you are not going to be able to utilize the vitamin from a normal swallowed pill or liquid. You may be surprised how quickly those tingles resolve. It may also help your Ataxia, or balance issues.

I hope you are feeling better soon, you have found a great place for info and support.

mamasaidso Apprentice
mamasaidso
Posted
  • Author

Thanks for the tip on the sublingual B12. I'm getting a little frustrated with my doctor as have made two requests for an order to get bloodwork done for deficiencies and still no response. Some doctors recommend seeing a nutritionist. Do you all think that's necessary? I've been doing quite a bit of research and think I can keep up with balanced meals. What's really pretty ironic about this recent diagnosis is that last year I went gluten free for several weeks while on a diet to reduce inflammation. I was feeling so bad I thought it might help and had no idea what was ahead of me. I had to eliminate all wheat, white flour, white sugar and white rice and potatoes, alcohol and caffeine. It was tough but I felt so good. Had to eat at least four cups of vegetables and fruit every day and small portion of lean meat. Felt great and I lost ten pounds to boot. Then, went off the diet, gained back ten pounds and felt bad again. Pretty funny, huh?

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Nancym Enthusiast
Nancym
Posted

You might want to check out The Gluten File (see signature). I'd definitely be supplementing B-12 and Folic acid but the other B's as well, B-6 can get depleted. Might as well get them all as B vitamins are water soluable and what you don't use just gets peed away.

Congrats on getting a clear diagnosis, so few of us do!

mamasaidso Apprentice
mamasaidso
Posted
  • Author

Had appt yesterday for biopsy results and seems I have severe blunting with some other things going on. Next week going in for x-ray of small intestine and will see what that shows. I think it's years of damage from the celiac. The sublingual B-12 is helping and think I have a long road ahead of me. Kind've worried about condition of my stomach. Well, day at a time.

ravenwoodglass Mentor
ravenwoodglass
Posted
Had appt yesterday for biopsy results and seems I have severe blunting with some other things going on. Next week going in for x-ray of small intestine and will see what that shows. I think it's years of damage from the celiac. The sublingual B-12 is helping and think I have a long road ahead of me. Kind've worried about condition of my stomach. Well, day at a time.

Well at least you now have your official celiac diagnosis, that would be the blunting. Do make sure that the material they give you to drink is gluten free, have you doctor note it on lab orders and then insist they double check before you drink. You may very well be right about the other damage being from the celiac, and it may heal fairly quickly once you are gluten free. Be sure you check any meds, OTC and script. I hope you feel better soon.

nikky Contributor
nikky
Posted

Just wanted to say welcome to the forum :) , im glad that you got your diagnosis.. the deficiency tests are a very good idea and checks on other family members would be good. Experts say that if one person has coeliac every 1 in 10 people in that family will also have it.. possibly more. Good luck. We are all here for you.

mamasaidso Apprentice
mamasaidso
Posted
  • Author

Thanks so much for the advice on drink for the x-ray. I wouldn't have thought of it. The vitamin deficiency panel came back okay, B-12 was at very low end of normal and folic acid was fine. Getting a monthly B-12 shot and take my supplements daily. It seems to be helping with my balance, too. Speaking of balance, I took a major tumble in a restaurant last week and had to have xrays and ct-scan of pelvis. Still sore, but hoping appt tomorrow will show no problems from fall. I have noticed in the last year my balance was really off. I am so relieved to have a diagnosis and know that I can reverse my health problems and feel better.

Thanks again for your support. So happy to have found this forum. You all are wonderful.

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