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I Finally Went To The Dr About Celiac Disease....

Guest AutumnE

By Guest AutumnE
in Coping with Celiac Disease

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Guest AutumnE
Guest AutumnE
Posted

I set up an appt with my internal medicine dr. When I told him what I had found through diet and research he agreed that it sounded like celiac disease with the positive results from the diet. He doesnt want to put me through testing (gluten challenge since I have been 5 months off it) but made me an appt to see a specialist about it.

He also ran a vitamin blood work to see if Im deficient in anything, and started me on a heavy duty vitamin program (previously only on prenatal vitamins) and also stated for me to wait at least 1 year before ttc. Im 34 years old but I dont want to take a chance on having a stillborn because of being deficient.

However, he stated a bone scan wasnt needed :huh: because I'm obese my bones would be larger anyways due to the suppourting weight. Has anybody else had this response? I thought that was standard. The gi dr may feel differently, I see him on September 21st. He's a different gi from the one Im use to, the last one who happened to be a close friend of the family didnt even run a scope on me and just stated I have ibs without any testing done :rolleyes:

He said with my history he is shocked he didnt question it before and apologized for not noticing it :)

Now I know unfortunately this gi dr will want to do a gluten challenge and bloodwork and I'm not up for it. Personally I just want to follow the diet and feel well since having the true diagnosis wont change a thing.

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queenofhearts Explorer
queenofhearts
Posted
He said with my history he is shocked he didnt question it before and apologized for not noticing it :)

Now I know unfortunately this gi dr will want to do a gluten challenge and bloodwork and I'm not up for it. Personally I just want to follow the diet and feel well since having the true diagnosis wont change a thing.

How wonderful to have a doctor who will admit he was wrong! And even apologize! You have a gem.

The more I look into this, the more I believe that having an official diagnosis is really not necessary, if you are already convinced the gluten-free diet is making you healthy. No one can force you to eat gluten! Now if you have family members who aren't cooperating, that might be an impetus to seek the diagnosis. But if not, & with your primary care physician on your side, you should be in pretty good shape.

I haven't been tested for bone density yet myself, though I fit the pattern for osteoporosis... I have heard that it is more of a problem for underweight people. Also your doctor may feel that since you are still quite young, if you follow the gluten-free diet you should be able to build up your bone strength without difficulty.

Leah

Ursa Major Collaborator
Ursa Major
Posted

Autumn, why bother with another GI? I am not sure what good it will do. You know you feel better off gluten, just keep it up.

Your doctor is wrong in dismissing the need for a bone density scan. My mother was obese, and likely had celiac disease as well (she had all the same symptoms as me). When she was about my age (between 50 and 55), my father hugged her one day, and broke two of her ribs! Now, it is NOT normal, even with a really squeezy hug, to break your ribs, meaning, it is very likely she had osteoporosis.

I am fortunate that my bone scan showed good bones. But everybody is different, and it is irresponsible to say that because you're overweight you can't have osteoporosis and don't need to have a bone scan to be sure you're okay. You should insist on one with your doctor. Ask him if he has x-ray vision, that he can be so certain your bones are fine?

Guest AutumnE
Guest AutumnE
Posted

Thanks Leah and Ursula :)

Sorry I couldnt reply sooner, we are selling our house and have been keeping it spotless and showing it the weekend.

I dont want to see the gi doctor but my family dr suggested I go. He doesnt know much at all about celiac disease he stated and wants to make sure everything is taken care of. I'll mention a bone scan to this new gi dr and if he doesnt want to do it I'll make an appt with my ob/gyn.

I know she would do it, I planned on seeing her anyways to make sure my body is up to par considering I would like to ttc within the next year. My daughter took almost 2 years of ttc so I'll need to see her for it.

I do really like my family practitioner he is very down to earth and humble. I have gone through 7 before I found him and three ob/gyn's.

I'm hopeful that the bloodwork I did will also help me about possible osteoporosis. I did have a bone scan 8 years ago, it was fine and it was a full body. Hopefully it hasnt changed although my symptoms were not like they have been the last 2 1/2 years.

Guest nini
Guest nini
Posted

I too was morbidly obese before my dx. 3 1/2 years later I have lost 110 pounds and still have a little ways to go, Before having my daughter I had several miscarriages and all that stuff...

IMHO you don't even need to go to the GI... if you are doing better on the gluten-free diet (and keep in mind it takes an average of 2 years to heal) then just stay on it. Your internal dr. can monitor your health, he works for YOU so you can insist you want a bone scan done, regularly get your thyroid, cholesterol levels, blood pressure, and he can check for nutritional deficiencies through bloodwork.

The people on this board will know more about Celiac and gluten intolerance than MOST gi dr's... (they don't have to live with it AND they are only looking at the gastrointestinal manifestations of the disease, they don't even LOOK at the other aspects of it, for the most part)

Jestgar Rising Star
Jestgar
Posted

I'm curious about the need for a bone scan.

I've just assumed that I'm vitamin/calcium/iron deficient and have taken steps to increase these and I think most people on the board do the same. If a bone scan shows that your bones are more porous than they should be is there anything you can do about it?

penguin Community Regular
penguin
Posted
I'm curious about the need for a bone scan.

I've just assumed that I'm vitamin/calcium/iron deficient and have taken steps to increase these and I think most people on the board do the same. If a bone scan shows that your bones are more porous than they should be is there anything you can do about it?

Mainly more agressive bone treatment such as boniva or fosomax.

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Michi8 Contributor
Michi8
Posted
I'm curious about the need for a bone scan.

I've just assumed that I'm vitamin/calcium/iron deficient and have taken steps to increase these and I think most people on the board do the same. If a bone scan shows that your bones are more porous than they should be is there anything you can do about it?

I'd expect that having a bone density test done would be helpful to first confirm there is an issue with bone health and, second, to have a baseline for monitoring progression of disease. If there is significant bone loss, then it can be treated more agressively than with diet alone...including supplements/meds and increasing weight bearing excercise.

Michelle

Jestgar Rising Star
Jestgar
Posted

Thanks, ladies.

Guest AutumnE
Guest AutumnE
Posted

Thanks :)

I dont really want to go to him, I have a feeling as someone stated earlier it would only serve a purpose if I wanted the blood work which doesnt matter much to me. I guess I figure 1 appt wont kill me and I have no copays so I wont be out money; just a little time. My family dr was just concerned since he doesnt know enough about it to help me much at all, so mainly its to appease him. My mom has osteopenia in her feet and her back. It showed up on a bone scan after 10 years of menopause with estrogen treatment the whole time. She also has been a huge vitamin taker and exerciser her whole life, It's also the side where I feel I inherited this lovely illness :rolleyes:

I just dont want to be like her at her age. She cant work, cant vacation much even though they have the money for it, and limps everywhere she goes at 59 along with my dad at 62. He has osteoporosis of the knees just like me. Im trying as hard as I can to not be like that at that age, I will still be a mom to a daughter who needs to go through college since I have a 2 year old at 34 years old and will definitely need to work to pay off the bills and I want to chase and play with my future grandkids; not sit on the couch and just enjoy watching them from afar.

Nisla, I had read six months or 1 year for recovery for the intestine. But I hadnt found information about the 2 year mark. I want to be healthy as I can be before I try for another one. I might have to put it off even longer. Congratulations on the weight loss :) I have lost 21 lbs myself :)

daffadilly Apprentice
daffadilly
Posted

Autumn, congrats on being gluten free and getting in better health. And also a big congrats on the weight loss. I hope you find it increasingly easy to drop lbs.

Hugs

Guest nini
Guest nini
Posted

If you took a poll of how long it took most of us on here to really start to notice majore improvements in our health, the average is probably about 2 years, I was actually told about the 2 year mark by a Celiac expert that I had an opportunity to speak with.

6 months is an absolute minimum and it can really take 2 years or even longer depending on how long you went undiagnosed, age at dx, severity of symptoms, family genetics etc... Be very careful of a Dr. that says it should be completely healed in only 6 months. They don't live with this like we do.

Guest AutumnE
Guest AutumnE
Posted

Daffadilly- Thanks :) I cant wait till it comes off and see how good my knees will feel and not be out of breath as easily.

Nisla-Im not sure how bad I have it but I have had serious symptoms for the last 2 years. I have lost over 10 inches of my hair, It was down to my belly button and now its only a few inches below my shoulders. It took me 10 years to grow that long originally. My back is better tremendously along with my sciatica is basically gone. My problem is getting accidentally glutened by a family member and my symptoms return for about 4 days. My husband is probably the worst about it. I just separate all my food now from his. Last week he had cross contamination in the lunch meat, chicken, and tuna fish packet we opened. I guarded my pork loin after that! Thank goodness I didnt eat it, I question him anytime he fixes his own stuff because he is a big sandwich person and will touch and separate the bread before he reaches into the meat.

I havent been given a time frame from dr's its just what I have found on the net. I'm just going at this alone, thank goodness I found this message board.

Kat-Kat Newbie
Kat-Kat
Posted

oh I hope it all goes great. Sound like you have started a great change. I have lost over30 lb in 4 months my dr was in ahwws he to said I sorry I thought it was just you but now he says everytime I go for blood work wow it is getting better keep your chin up and come around here with updates

Guest AutumnE
Guest AutumnE
Posted

Thanks kat-kat :)

Congratulations to you also!

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