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On My Way To Being Diagnosed


maggie123

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maggie123 Newbie

New to this site. have been reading alot about celiac recently and need to know more.

I was diagnosed with hypothyroidism about 8 years ago. recently my sister was diagnosed with celiac disease. With her persistence I asked the doc to do the bloodtest on me and it came back positive.

I have an endoscopy next week.

Knowing what I know now I will not be surprised if endo is positive. for the past 8 years I have blamed my thyroid problems for joint pain, constipation, bloating, gas, general fatique weight that

just will not budge! It is all so clear to me now!

So, I look forward to gathering all the info necessary for me to regain my heslth back!

Maggie123


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Lisa Mentor

Welcome Maggie,

You won't find a better place to learn about Celiac. You will find great help here.

You already have a diagnosis of Celiac with positive blood work. An endoscopy can also confirm with a biopsy and sometimes visibly.

Let us know if we can help you with anything.

Darn210 Enthusiast

Welcome Maggie!!

Kudos to your sister for being persistent!! And kudos to you for listening to your sister!! Lots of info here along with a lot of helpful and caring people. Tell your sister to check out this forum, too.

GlutenWrangler Contributor

I agree, if you have positive bloodwork, you are already diagnosed with celiac disease. An endoscopy is trivial at this point in terms of diagnosis, but it may be helpful to assess your damage. If you have any specific questions, don't hesitate to ask. Otherwise I definitely recommend doing some reading on this site, it's a great resource. Good luck,

-Brian

markr Newbie
New to this site. have been reading alot about celiac recently and need to know more.

I was diagnosed with hypothyroidism about 8 years ago. recently my sister was diagnosed with celiac disease. With her persistence I asked the doc to do the bloodtest on me and it came back positive.

I have an endoscopy next week.

Knowing what I know now I will not be surprised if endo is positive. for the past 8 years I have blamed my thyroid problems for joint pain, constipation, bloating, gas, general fatique weight that

just will not budge! It is all so clear to me now!

So, I look forward to gathering all the info necessary for me to regain my heslth back!

Maggie123

Boy, do I relate to what you are saying. While you are being tested, make sure you check for diabetes. I have Type 1 diabetes for 26 years, and I just found out that I have celiac. It effects about 12 -15% of of Type 1 diabetics. Like you said: it is all so clear to me now! :huh:

Mark

BSinCO Newbie

I am glad to hear that you are seeking support so soon. I have been on a gluten, soy, dairy, corn, and tomato free diet for a year and a half now. I am just joining the forum tonight. I am still having health issues and am looking for some help and advice myself.

I have done so much research over the past year. Glutenfreegirl.com gives some great advice and links to other informative sites.

I hope you start to feel better soon.

:D

New to this site. have been reading alot about celiac recently and need to know more.

I was diagnosed with hypothyroidism about 8 years ago. recently my sister was diagnosed with celiac disease. With her persistence I asked the doc to do the bloodtest on me and it came back positive.

I have an endoscopy next week.

Knowing what I know now I will not be surprised if endo is positive. for the past 8 years I have blamed my thyroid problems for joint pain, constipation, bloating, gas, general fatique weight that

just will not budge! It is all so clear to me now!

So, I look forward to gathering all the info necessary for me to regain my heslth back!

Maggie123

maggie123 Newbie
Welcome Maggie,

You won't find a better place to learn about Celiac. You will find great help here.

You already have a diagnosis of Celiac with positive blood work. An endoscopy can also confirm with a biopsy and sometimes visibly.

Let us know if we can help you with anything.

Thanks for all your support. i will definitely keep you posted. Question - Kraft crunchy peanut butter-

safe for me to eat? It has been a morning staple for me for quite sometime on toast.

This is a great site and I know I will benefit from all you veteran Celiacers.

Maggie 123

Canada


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maggie123 Newbie
Welcome Maggie!!

Kudos to your sister for being persistent!! And kudos to you for listening to your sister!! Lots of info here along with a lot of helpful and caring people. Tell your sister to check out this forum, too.

Had it not been for my sister I would never suspected celiac nor my doctor as he was quite surprised and I think he will really be surprised with endo results. He is a great doc but he

thinks this bloodwork was positive due to family markers showing up???I didnt say anything - the proof will be in the endo. It just goes to show that not all docs are familiar with this disease.

But it will be a learning curve for him and hopefully help others in his practice will benefit.

Big learning curve for me too!

Maggie 123

Canada

ravenwoodglass Mentor
Had it not been for my sister I would never suspected celiac nor my doctor as he was quite surprised and I think he will really be surprised with endo results. He is a great doc but he

thinks this bloodwork was positive due to family markers showing up???I didnt say anything - the proof will be in the endo. It just goes to show that not all docs are familiar with this disease.

But it will be a learning curve for him and hopefully help others in his practice will benefit.

Big learning curve for me too!

Maggie 123

Canada

If by some chance that endo comes back negative please ignore that result and do the diet anyway. The endo can miss a lot of us, so can the blood work but with a positive blood test you are already diagnosed. The proof is really in your response to the diet, don't let your doctor talk you out of it if the endo is not positive. There are doctors who with a positive on blood work but a negative on endo will tell folks it is okay to continue to eat gluten until the villi are damaged enough to show positive on endo. Don't let yours do that to you. You have found a great place for knowledge and support, welcome.

maggie123 Newbie
Welcome Maggie,

You won't find a better place to learn about Celiac. You will find great help here.

You already have a diagnosis of Celiac with positive blood work. An endoscopy can also confirm with a biopsy and sometimes visibly.

Let us know if we can help you with anything.

I need to know more about insomnia and the connection with celiac.

Any info on this. Thanks in advance.

Maggie 123

Darn210 Enthusiast
I need to know more about insomnia and the connection with celiac.

Any info on this. Thanks in advance.

Maggie 123

Maggie, there is a whole section devoted to sleep. I would browse through some of those threads and/or do some searches.

maggie123 Newbie
Maggie, there is a whole section devoted to sleep. I would browse through some of those threads and/or do some searches.

thanks Janet I will go there.

maggie 123

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    • trents
      If you have been eating the gluten equivalent of 4-6 slices of wheat bread daily for say, 4 weeks, I think a repeat blood test would be valid.
    • englishbunny
      it did include Total Immunoglobin A which was 135, and said to be in normal range. when i did the blood test in January I would say I was on a "light' gluten diet, but def not gluten free.  I didn't have any clue about the celiac thing then.  Since then I have been eating a tonne of gluten for the purpose of the endoscopy....so I'm debating just getting my blood test redone right away to see if it has changed so I'm not waiting another month...
    • trents
      Welcome to the forum, @englishbunny! Did your celiac panel include a test for "Total IGA"? That is a test for IGA deficiency. If you are IGA deficient, other IGA test resultls will likely be falsely low. Were you by any chance already practicing a reduced gluten free diet when the blood draw was done?
    • englishbunny
      I'm upset & confused and really need help finding a new gastro who specializes in celiac in California.  Also will welcome any insights on my results. I tested with an isolated positive for deamidated IGA a few months ago (it was 124.3, all other values on celiac panel <1.0), I also have low ferritin and Hashimotos. Mild gastro symptoms which don't seem to get significantly worse with gluten but I can't really tell... my main issues being extreme fatigue and joint pain. The celiac panel was done by my endocrinologist to try and get to the bottom of my fatigue and I was shocked to have a positive result. Just got negative biposy result from endoscopy. Doctor only took two biopsies from small intestine (from an area that appeared red), and both are normal. Problem is his Physician's Assistant can't give me an answer whether I have celiac or not, or what possible reason I might have for having positive antibodies if I don't have it. She wants me to retest bloods in a month and says in the meantime to either "eat gluten or not, it's up to you, but your bloodwork won't be accurate if you don't" I asked if it could be I have early stage celiac so the damage is patchy and missed by only having two samples taken, and she said doctor would've seen damaged areas when performing endoscopy (?) and that it's a good sign if my whole intestine isn't damaged all over, so even if there is spotty damage I am fine.  This doesn't exactly seem satisfactory, and seems to be contrary to so much of the reading and research I have done. I haven't seen the doctor except at my endoscopy, and he was pretty arrogant and didn't take much time to talk. I can't see him or even talk to him for another month. I'm really confused about what I should do. I don't want to just "wait and see" if I have celiac and do real damage in the meantime. Because I know celiac is more that just 'not eating bread' and if I am going to make such a huge lifestyle adjustment I need an actual diagnosis. So in summary I want to find another doctor in CA, preferably Los Angeles but I don't care at this stage if they can do telehealth! I just need some real answers from someone who doesn't talk in riddles. So recommendations would be highly welcomed. I have Blue Shield CA insurance, loads of gastros in LA don’t take insurance at all 😣
    • trents
      Okay, Lori, we can agree on the term "gluten-like". My concern here is that you and other celiacs who do experience celiac reactions to other grains besides wheat, barley and rye are trying to make this normative for the whole celiac community when it isn't. And using the term "gluten" to refer to these other grain proteins is going to be confusing to new celiacs trying to figure out what grains they actually do need to avoid and which they don't. Your experience is not normative so please don't proselytize as if it were.
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