Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Symptomatic And Blood Work Today

homemaker

Recommended Posts

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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,930
    • Most Online (within 30 mins)
      7,748
    Mhp
    Newest Member
    Mhp
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Wheatwacked
      Bitters for digestion?

      By Wheatwacked · Posted

      Definitely get vitamin D 25(OH)D.  Celiac Disease causes vitamin D deficiency and one of the functions of vitamin D is modulating the genes.  While we can survive with low vitamin D as an adaptation to living in a seasonal environment, the homeostasis is 200 nmol/L.  Vitamin D Receptors are found in nearly every cell with a nucleus,while the highest concentrations are in tissues like the intestine, kidney, parathyroid, and bone.  A cellular communication system, if you will. The vitamin D receptor: contemporary genomic approaches reveal new basic and translational insights  Possible Root Causes of Histamine Intolerance. "Low levels of certain nutrients like copper, Vitamins A, B6, and C can lead to histamine build up along with excess or deficient levels of iron. Iodine also plays a crucial role in histamine regulation."  
    • AnnaNZ
      Bitters for digestion?

      By AnnaNZ · Posted

      I forgot to mention my suspicion of the high amount of glyphosate allowed to be used on wheat in USA and NZ and Australia. My weight was 69kg mid-2023, I went down to 60kg in March 2024 and now hover around 63kg (just after winter here in NZ) - wheat-free and very low alcohol consumption.
    • AnnaNZ
      Bitters for digestion?

      By AnnaNZ · Posted

      Hi Jess Thanks so much for your response and apologies for the long delay in answering. I think I must have been waiting for something to happen before I replied and unfortunately it fell off the radar... I have had an upper endoscopy and colonoscopy in the meantime (which revealed 'minor' issues only). Yes I do think histamine intolerance is one of the problems. I have been lowering my histamine intake and feeling a lot better. And I do think it is the liver which is giving the pain. I am currently taking zinc (I have had three low zinc tests now), magnesium, B complex, vitamin E and a calcium/Vitamin C mix. I consciously think about getting vitamin D outside. (Maybe I should have my vitamin D re-tested now...) I am still 100% gluten-free. My current thoughts on the cause of the problems is some, if not all, of the following: Genetically low zinc uptake, lack of vitamin D, wine drinking (alcohol/sulphites), covid, immune depletion, gastroparesis, dysbiosis, leaky gut, inability to process certain foods I am so much better than late 2023 so feel very positive 🙂    
    • lehum
      4.5 years into diagnosis, eating gluten-free and still struggling: would love support, tips, & stories

      By lehum · Posted

      Hi and thank you very much for your detailed response! I am so glad that the protocol worked so well for you and helped you to get your health back on track. I've heard of it helping other people too. One question I have is how did you maintain your weight on this diet? I really rely on nuts and rice to keep me at a steady weight because I tend to lose weight quickly and am having a hard time envisioning how to make it work, especially when not being able to eat things like nuts and avocados. In case you have any input, woud be great to hear it! Friendly greetings.
    • Hmart
      Is this celiac?

      By Hmart · Posted

      I was not taking any medications previous to this. I was a healthy 49 yo with some mild stomach discomfort. I noticed the onset of tinnitus earlier this year and I had Covid at the end of June. My first ‘flare-up’ with these symptoms was in August and I was eating gluten like normal. I had another flare-up in September and then got an upper endo at the end of September that showed possible celiac. My blood test came a week later. While I didn’t stop eating gluten before I had the blood test, I had cut back on food and gluten both. I had a flare-up with this symptoms after one week of gluten free but wasn’t being crazy careful. Then I had another flare-up this week. I think it might have been caused by Trader Joe’s baked tofu which I didn’t realize had wheat. But I don’t know if these flare-ups are caused by gluten or if there’s something else going on. I am food journaling and tracking all symptoms. I have lost 7 pounds in the last 10 days. 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.