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New To All This, I Think I'm In Denial.

TortleLisa

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TortleLisa Newbie
TortleLisa
Posted

Hello, I have no idea how to do this type of forum and hope I am doing this right so far. This could be a long one, bare with me please. Brief history...

TTC for 10 years, another denial story in itself, finally conceived via IVF. Gave birth in oct. 06. My back was bothering me, went to all the post partum checks and "its normal" I was told, well Dec. 06 went to pcp, saw a new one, she listened to me sent me for x-rays. A few days later the nurse calls back, "you have 3 compression fractures as well as osteoporosis in your back and hips, the doctor would like to see you next week, have a nice weekend!" Not joking, I was stunned. I'm 36 btw. After a visit with the pcp, she refers me to a rhematologist. She gives me a great cortisone shot in my hip, b/c I can barely walk and sends me out for more tests, one of which being the celiac blood test. It comes back with a high positive as well as a problem with my parathyroid, so more doctors to be refered to.

The doctor that I have for the celiac disease tells me that, I being overweight, do not have the symptoms of celiac and would probably want them b/c I would loose weight, not kidding. He has said this to me more than once. He is old school and hard to understand, not wanting to offend anyone but he is asian and has a hard to understand, quiet voice. He tells me I need to have the biopsy done, had it done and of course shows "inconclusive"? At the follow-up he tells me to continue the gluten free diet for three months and then re-test with blood work.

So I have no idea what to do, I have no problems with food, only lactose intolerant. My sister is the one with all the stomach issues and she tested neg. I have been gluten free for 2 1/2 months and have my blood test in a few weeks. Should I just get over it, "buck up" and move on? I have no clue what to do. I have been going to several different doctors, as I'm sure alot of you have as well. I don't want to come off in my first post as a "Whinebutt" but I need help. I'm tired of doctors, tired of finding something else wrong with me, and I just want to eat some bread and butter! LOL

My lab results #'s Transglutaminase iga autoabs 73.1 reference for lab is 10.0 positive?

Any help would be appreciated. I know while going through infertility I posted on a different type of board and was given the greatest support and help and made friends with many amazing women, I hope to find the same here.

Thanks for reading my long post, if you made it this far, I appreciate it.

Lisa

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CarlaB Enthusiast
CarlaB
Posted

Welcome, Lisa!

Being overweight and celiac is very common ... but an old school doctor would be likely to dismiss that.

Have you seen any changes going gluten-free?

Lactose intolerance is very common among celiacs because the part of the intestinal villi that digests the lactose is gone.

angelbender Newbie
angelbender
Posted

Welcome Lisa! Sorry you're having so much trouble! You will get ALOT of answers here from people who know more than me. I just wanted to post that you CAN be overweight and be Celiac. I was last year before going gluten free and I am one of the "lucky ones" that is losing weight now on the gluten-free diet. All of that said, please note to your doc that it is a crappy way to lose weight. Pun intended. He clearly doesn't understand Celiac! Some of my tests were positive (including one Celiac gene) and the my biopsy was "inconclusive" as well, I think. My old GI didn't know what he was doing I think. I will not have another one done now that I am finally feeling getter gluten-free.......or at least I wouldn't eat gluten again for it. I am at the library and will have to leave now, but are you seeing a GI doc? Maybe you could find one here on this forum in your area? Wish you well! Angel :P

Murph Newbie
Murph
Posted

I can't count the # of times I've read of someone w/ negative or inconclusive biopsies ending up being diagnosed celiac by blood/genetic test and eventual positive biopsy. Long ago I read of one long-time poster advising ppl to have the doc get 20 samples instead of the standard 10 just because it's so hit-or-miss.

And I must echo the other posters on the nonsense that a celiac must be thin. Any Dr. who believes that and uses it in their diag is simply not up-to-date on celiac disease.

Oh, and regarding lactose intolerance & celiac - it's that the enzyme lactase is secreted at the tips of villi, so the damage from celiac disease prevents it.

TortleLisa Newbie
TortleLisa
Posted
  • Author

Thanks for the welcome and the information.

As for how I feel on the diet... sometimes I feel worse, like tired and moody. My stools have changed, not for the better. :huh: (TMI) Maybe it's all the bad working its way out, I'm giving it a chance. Or maybe b/c of the baby? Hormonal still, ask my dh! LOL

The doctors keep calling me A-symptomatic, other than the bone loss I really don't have any classic symptoms. Then again, my denial has kept me from researching this as much as I did Infertility. And the classic symptoms come from a blk/wht zerox copy of a brochure my "old school" doctor gave me on the way out the door.

I hope to learn as much as I can from you all, feel free to point me in the right direction. :D

SunnyDyRain Enthusiast
SunnyDyRain
Posted
Thanks for the welcome and the information.

As for how I feel on the diet... sometimes I feel worse, like tired and moody. My stools have changed, not for the better. :huh: (TMI) Maybe it's all the bad working its way out, I'm giving it a chance. Or maybe b/c of the baby? Hormonal still, ask my dh! LOL

The doctors keep calling me A-symptomatic, other than the bone loss I really don't have any classic symptoms. Then again, my denial has kept me from researching this as much as I did Infertility. And the classic symptoms come from a blk/wht zerox copy of a brochure my "old school" doctor gave me on the way out the door.

I hope to learn as much as I can from you all, feel free to point me in the right direction. :D

If you feel tired and moody, might want to make sure your getting all your vitamins and minerals. If your body is starting to really absorb everything, you really need them. Also make sure you are eating complex carbohydrates for some energy. You are off gluten, but are you on good healthy foods? Also, you might notice now gluten-free, you are much more sensitive to gluten, so you feel like crap much easier.

It's not unsual to get a inconclusive biopsy, but it is pretty much useless for you to be diagnosed with a blood test when you have been eating gluten-free. You need to be eating gluten so the antibodies show up in your blood.

Read this site, and all the infromation you can find, Celaic is multi-facieted.

Nancym Enthusiast
Nancym
Posted

Being gluten-free means your tests are going to come back negative.

Gosh, you say you have no trouble with food but I'd call that sort of osteoperosis trouble, with a capital T!

Your doctor sounds terrible. He should be hopping up and down trying to discover why you have such awful osteoperosis at your young age not telling you that you should be glad to be a celiac. Sheesh! That's ignorance coupled with callousness.

If I were you I'd hop onto investigating vitamin D3 (cholecaliferol) and vitamin K2. You gotta start taking charge of your health. Fortunately this is very easy to do now with the Internet.

A great resource is: vitamindcouncil.com

I would be very hesitant to take any of the prescription drugs for osteoperosis. They seem to cause bone to rebuild badly and rob bone from the jaw, from what I've read. Take steps to correct whatever is causing the problem (Malabsorption? Gluten? D3 deficiency? K deficiency?) You might well have to dig in and investigate this yourself. Find a better doctor, one who listens and takes you seriously.

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tarnalberry Community Regular
tarnalberry
Posted

If you are 100% certain that you've eliminated 100% of gluten (wheat, barley, rye, and oats) from your diet, including all the hidden sources (like soy sauce, some broths, lotion, playdoh, etc.) and have gotten rid of any chance of contamination in your home, then I would ask what difference the diet has made. *Any* changes are pieces of data to use.

See if the test shows lower tTg when you get it back. If you're eating well (not lots of high carb, low protein, low fiber, gluten-free substitution products), and supplementing vitamins for what you weren't absorbing, then it may be time to look at other issues as well.

dionnek Enthusiast
dionnek
Posted

infertility is also a symptom of celiac, so you have more than just one :) (sorry). Why do they want to do the blood test again after 3 months - that will not really tell you anything except for maybe the fact that if it is in the normal range, then the gluten-free diet is working. It took me 6 months on the diet before I even noticed any difference, and I still have problems (been one year), but my intestines were completely toast :lol:

I've heard it can take up to 2 years to heal depending on how much damage is done.

BTW, pregnancy can kick off celiac. Maybe you should look into the genetic testing (not sure if you can have a dr. do this - I tested my daughter through Enterolab's genetic testing but insurance does not pay).

Good luck and keep reading/asking questions. Dr's don't know much about this disease (I went through 10 doctors in about 5 years before I found one who could figure it out!)

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