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Symptomatic And Blood Work Today

homemaker

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homemaker Enthusiast
homemaker
Posted

I am a newbie on this board so hi to everyone!

Within the last week I found out my sister has Celiac Disease...

I am of Gaelic Scot origin and have suffered from chronic tummy troubles, including

constipation, abdominal pain, weight gain, joint pain, migraines...worse stomach pain

with the ingestion of wheat bran...

So I am off for antibody blood work today!

Wish me luck!

A question however...is capsule endoscopy ever used as a replacement to endoscopic biopsy?

ALSO

If I know my sister has the disease and if my blood work is suggestive of celiac disease,

what is the risk of just going gluten free? Do people just skip the endo, and go totally

gluten free for life on their own?

Pardon the loads of questions! :unsure:

Thanks

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ang1e0251 Contributor
ang1e0251
Posted

I have heard of a person who used the capsule which will work for visible damage, but most damage is microscopic so you would be wise to have the biopsies.

There is no risk of just going gluten-free. It will be fine for you, but if you're a person who sticks to a program better with a solid dx, then wait for all the tests. Also having a firm dx will be useful if you have children or plan too. A child's dr will listen to the test results more than your opinion.

homemaker Enthusiast
homemaker
Posted
  • Author
I have heard of a person who used the capsule which will work for visible damage, but most damage is microscopic so you would be wise to have the biopsies.

There is no risk of just going gluten-free. It will be fine for you, but if you're a person who sticks to a program better with a solid dx, then wait for all the tests. Also having a firm dx will be useful if you have children or plan too. A child's dr will listen to the test results more than your opinion.

Thanks for your reply...I will probably wait until the test results come back and wait and see the benefits of any endoscopic procedure.

You make a good point of trying to get a firm diagnosis. My kids are now 22 & 24, so they are pretty much on their own, but for their future and their childrens future, it might be beneficial.

My sister told me her counts or something ...(I am such a newbie!) were over 100 when tested with her blood work and it was confirmed she had Celiac upon endoscopy...

I am a pretty determined person when it comes to dietary change...I realize that if I do decide to go gluten free without endoscopy...that I have to stick to the program...that there is nothing wishy washy in going gluten free...you have to be totally gluten free for life....

But thanks for giving me something to consider....

pewpewlasers Rookie
pewpewlasers
Posted

Welcome!

I will tell you from experience that switching to a gluten free diet before a confirmed dx was a bad choice in my case. My Mother got diagnosed and she suggested that I try going gluten free. Within a month all my symptoms were gone. That was good!

However, I still occasionally have some problems and have had severe problems that seem to be unrelated to celiac within the last couple months. I recently saw a new doctor that reffered me to a gastro and it seems like I might have to be put on a gluten challenge to get a confirmed dx now. :(

If you have other hereditary issues like I do, ie. Crohn's, etc. I would definitely get the test now. Since you are on your way to getting a dx, I would just finish it up.

It's up to you! Good luck!

homemaker Enthusiast
homemaker
Posted
  • Author
Welcome!

I will tell you from experience that switching to a gluten free diet before a confirmed dx was a bad choice in my case. My Mother got diagnosed and she suggested that I try going gluten free. Within a month all my symptoms were gone. That was good!

However, I still occasionally have some problems and have had severe problems that seem to be unrelated to celiac within the last couple months. I recently saw a new doctor that reffered me to a gastro and it seems like I might have to be put on a gluten challenge to get a confirmed dx now. :(

If you have other hereditary issues like I do, ie. Crohn's, etc. I would definitely get the test now. Since you are on your way to getting a dx, I would just finish it up.

It's up to you! Good luck!

You make a good point about the risk of having to go on a gluten challenge...I certainly would not want that to happen...

Thanks...will take that into consideration when making my decision!

GottaSki Mentor
GottaSki
Posted

I would wait for the blood test results. Both blood tests and biopsy often have false negative results. Personally my tTG IgA was borderline, but the endo biopsy confirmed Celiac which did help us understand the necessity of becoming gluten-free.

It is different for everyone. You already have some understanding of Celiac because of your sister. I had never heard the word Celiac before the minor hit on my tTG IgA blood test and was skeptical , as I educated myself it became quite clear that I'd been Celiac my entire life.

Good Luck in finding your answers!

homemaker Enthusiast
homemaker
Posted
  • Author
I would wait for the blood test results. Both blood tests and biopsy often have false negative results. Personally my tTG IgA was borderline, but the endo biopsy confirmed Celiac which did help us understand the necessity of becoming gluten-free.

It is different for everyone. You already have some understanding of Celiac because of your sister. I had never heard the word Celiac before the minor hit on my tTG IgA blood test and was skeptical , as I educated myself it became quite clear that I'd been Celiac my entire life.

Good Luck in finding your answers!

Thanks Gotta Ski...Yeah I have pretty much plan to stay on my usual gluten containing diet until this whole thing is figured out...

Although I must admit I have been sampling some of the Gluten free goodies, just to see what they taste like!

Thanks

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    • rei.b
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      By rei.b · Posted

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      Food and environmental allergies involve IgE antibodies.  IgE antibodies provoke histamine release from mast cells.   Celiac disease is not always visible to the naked eye during endoscopy.  Much of the damage is microscopic and patchy or out of reach of the scope.  Did they take any biopsies of your small intestine for a pathologist to examine?  Were you given a Marsh score? Why do you say you "don't have intestinal damage to correlate with lifelong undiagnosed celiac disease"?   Just curious.  
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