Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

Biopsy Results In Already

Meg123

Recommended Posts

Meg123 Explorer
Meg123
Posted

Well it came back negative :( I'm upset with myself for spending so much money on something I knew had a significant chance of coming back negative even if it was positive....

I don't have any of the other conditions that cause the raised tTG, and it's going up slowly, so I'm taking it as celiac disease, like you've all been telling me over the past months :rolleyes:;) I just wondered if early osteo arthritis might cause the raised ttg, but apparently it's the autoimmune one which can cause that, which i def dont have.

So I have an appointment with Dr on Monday to take one last base blood test and then I'm gluten free strict strict strict for at least 8 months. Then I'll do a repeat blood test to satisfy my own curiosity. But I'll commit to 8 months. I hope to feel a lot better soon too :)

Thanks for all the advice and support, sorry I've been such a pain with all the waiting etc My husband doesn't want to hear about it anymore, I guess I've been unbearable..

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

Celiac.com Sponsor (A8-M):


Hawthorn Rookie
Hawthorn
Posted

My husband doesn't want to hear about it anymore, I guess I've been unbearable..

For what it's worth Meg, I suspect I am unbearable too. I guess when you feel so ill, it's hard to think of anything else, and it's hard to walk around happy and smiling when you are in constant pain and worried about what on earth is wrong with you. It is hard.

Good luck with the gluten free diet, and I really really hope that you feel better soon.

Will you be undergoing further testing to rule out other causes?

Meg123 Explorer
Meg123
Posted
  • Author

For what it's worth Meg, I suspect I am unbearable too. I guess when you feel so ill, it's hard to think of anything else, and it's hard to walk around happy and smiling when you are in constant pain and worried about what on earth is wrong with you. It is hard.

Good luck with the gluten free diet, and I really really hope that you feel better soon.

Will you be undergoing further testing to rule out other causes?

Thanks Hawthorn :)

Yeah it is hard, and is especially distressing when you have young children who need and deserve a lot more of me than I have given them / have been able to give them...

No, I'm not going to pursue anything else just yet. Over the years, I've spent a fortune on this, that and everything else. I've had so many tests, scans etc etc and its always a case of back to the drawing board. But I cannot deny, I felt better gluten free, except, like I said in your thread, that I still wasn't quite quite right, but would have still been having traces for sure.

The other thing is that they recently discovered that I'm Insulin Resistant. When I am gluten free, I will be able to better fine tune the dose for that medication, and I'm hoping that between having my insulin resistance sorted, eating low GI and gluten free, that I'll lose weight etc and still hoping to feel better. IF in 8 months my tTG hasnt gone down then maybe I'll push to find out what other autoimmune disease I have(???) but that's the immediate plan ;)

ravenwoodglass Mentor
ravenwoodglass
Posted

The osteoarthritis may be linked to celiac and hopefully the pain will be relieved after you have been on the diet for a bit. Do your pre and post meal checks for your blood sugar. After you have healed you may find that you are not insulin resistant any longer. Can't say for sure but since I was diagnosed when glutened as diabetic I decided to wait on meds and went with low GI index foods and blood sugar testing and found that it was that glutening that made me appear to be diabetic. It may not be the case for you but hopefully you will stablize as your body heals. Do make sure to check any meds they have given you to be sure they are gluten free.

Meg123 Explorer
Meg123
Posted
  • Author

The osteoarthritis may be linked to celiac and hopefully the pain will be relieved after you have been on the diet for a bit. Do your pre and post meal checks for your blood sugar. After you have healed you may find that you are not insulin resistant any longer. Can't say for sure but since I was diagnosed when glutened as diabetic I decided to wait on meds and went with low GI index foods and blood sugar testing and found that it was that glutening that made me appear to be diabetic. It may not be the case for you but hopefully you will stablize as your body heals. Do make sure to check any meds they have given you to be sure they are gluten free.

Thanks Ravenwoodglass, for all your help and advice over the past months. I always look forward to your posts :)

love2travel Mentor
love2travel
Posted

Well it came back negative :( I'm upset with myself for spending so much money on something I knew had a significant chance of coming back negative even if it was positive....

I don't have any of the other conditions that cause the raised tTG, and it's going up slowly, so I'm taking it as celiac disease, like you've all been telling me over the past months :rolleyes:;) I just wondered if early osteo arthritis might cause the raised ttg, but apparently it's the autoimmune one which can cause that, which i def dont have.

So I have an appointment with Dr on Monday to take one last base blood test and then I'm gluten free strict strict strict for at least 8 months. Then I'll do a repeat blood test to satisfy my own curiosity. But I'll commit to 8 months. I hope to feel a lot better soon too :)

Thanks for all the advice and support, sorry I've been such a pain with all the waiting etc My husband doesn't want to hear about it anymore, I guess I've been unbearable..

You've really been through a lot lately so take the time to heal, mentally and physically. Remember, too, that only 39% of all biopsies are done correctly and there are lots of false negatives. Do you know perchance how many biopsies were taken? Apparently at least 8-11 are needed for accuracy.

Regardless, you know yourself far better than anyone else and if going off gluten makes you feel much better you know precisely what to do! :D

Archived

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

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


  • Member Statistics

    • Total Members
      126,852
    • Most Online (within 30 mins)
      7,748
    ToriN
    Newest Member
    ToriN
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.7k
  • Celiac.com Sponsor (A22):



  • Who's Online (See full list)

  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • knitty kitty
      Years of testing - no real answers

      By knitty kitty · Posted

      The intestinal tract can be as long as twenty-two feet long, so intestinal damage may be out of the reach of endoscopy tools.  Some people have had more success with capsule endoscopy, but this method cannot take biopsies.  
    • knitty kitty
      What should I do with these test results?

      By knitty kitty · Posted

      @Jack Common, It's possible that your antibiotic for giardiasis has caused thiamine deficiency.   https://hormonesmatter.com/metronidazole-toxicity-thiamine-deficiency-wernickes-encephalopathy/ And... Thiamine and benfotiamine: Focus on their therapeutic potential https://pmc.ncbi.nlm.nih.gov/articles/PMC10682628/ For clarification, the weight of your slice of bread is not equal to the amount of gluten in it.   Gluten helps form those big holes in breads, so breads like thick chewy pizza crust and artisan breads contain more gluten than cakes and cookies.  
    • knitty kitty
      Guidance on next steps after the lab tests

      By knitty kitty · Posted

      Sorry about that link.  It was meant for a different post.   Do consider taking high dose Vitamin D in order to get your level up to around 80 nm/l quickly.   This is the level where Vitamin D can properly work like a hormone and can improve the immune system and lower inflammation.  It makes a big difference.   I took high dose Vitamin D and really improved quickly.  I ate Vitamin D supplements throughout the day like m&ms.  My body craved them.  Very strange, I know, but it worked.   Before you have surgery, you really need to improve your vitamins and minerals.  Vitamins A and D, Vitamin C and Niacin are extremely important to skin health and repair.  Without these, the body does not repair itself neatly.  I've got a scar worthy of a horror movie.  My doctors were clueless about nutritional deficiencies. A sublingual Vitamin B12 supplement will work better for boosting levels.  Tablets or liquid drops in the mouth are easily absorbed directly into the blood stream.   Do bear in mind that about half of Celiac people react to the protein in dairy, Casein, the same as they react to gluten because segments of the protein in Casein resembles segments of the protein Gluten.  Some people lose the ability to produce lactase, the enzyme that digests Lactose, the sugar in dairy, as they age.  Others lose the ability to produce lactase because the intestinal Villi become damaged during the autoimmune response against gluten, and damaged chili can't produce lactase.   Do try Benfotiamine.  It has been shown to improve gastrointestinal health and neuropathy. Keep us posted on your progress!
    • ABP2025
      Guidance on next steps after the lab tests

      By ABP2025 · Posted

      Thanks sending me additional links including how to test for thiamine deficiency. With regards to your first link, I wasn't diagnosed with giardiasis and I didn't take antibiotic for it. I try to generally stay away from antibiotic unless absolutely necessary as it might affect gut health. For treating phimosis, the doctor didn't give me antibiotics. I need to have a circumcision surgery which I haven't got around to schedule it.
    • ABP2025
      Guidance on next steps after the lab tests

      By ABP2025 · Posted

      I'm not vegan, just vegetarian. I consume dairy but not egg. So I have started including some Vitamin D fortified milk as well as a multivitamin with 2000 IU daily. For Vitamin B12, like you said it's very difficult to get it from just vegetarian sources and have started consuming Vitamin B Complex daily. My PCP was worried when my Vitamin D result came out as It was 3.7 ng/ml last year. He said that being low for a lengthy time could have done some damage to the body over the years. Now, though Vitamin D level has improved after the supplements, I'm not sure if the neurological damage has already been done. I'll continue including the supplements and see if my symptoms improve. I'll also get tested for celiac to see if I need to be in gluten-free diet.
×
×
  • Create New...