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

New Here! Any Point In The Scope

Jungle

Recommended Posts

Jungle Rookie
Jungle
Posted

Hi,

I just got my tTG results yesterday with 0-20 being normal and I am 193. Also a family history of Celiacs (my brother and niece)

I was wondering is there any point in getting scoped?

I have very few symptoms if any. But with numbers that high my body is obviously reacting.

Thanks

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

Celiac.com Sponsor (A8-M):


T.H. Community Regular
T.H.
Posted

My own personal opinion would be no, unless you are having sharp pain or burning in the abdominal area (could be a sign of ulcers, you know?). I'd go gluten free, and if that doesn't take care of everything, THEN I might think about a scope to see if there are any other problems.

I got scoped BEFORE my blood tests, for something else entirely, but when my daughter's blood tests came back positive, we didn't bother (the third in the family). Then my brother DID get the scope because his pain was suggestive of ulcers, which he did have, and they had to keep an eye on them.

cassP Contributor
cassP
Posted

i agree with Shauna...

you most definitely do not need the scope for a diagnosis. you are clearly positive..

BUT- i would consider a scope in the semi-near future.. or a few years- just to make sure everything's okay. i had a colonoscopy after my blood tests- just to make sure i didnt have anything else going on- it's a relief to get that clean bill of health.

now get on the diet :)

luvs2eat Collaborator
luvs2eat
Posted

My doc said a scope wasn't necessary as my bloodwork was so positive. I ended up having one a few years later for GERD issues, but at the time of diagnosis, it just wasn't needed.

Jungle Rookie
Jungle
Posted
  • Author

Thanks everyone,

I didn't think there was any point and I have already started on my new lifestyle. Wrapping your head around all this takes a little while. But I am hoping that although I didn't have much for symptoms that I will notice a big improvement anyway.

love2travel Mentor
love2travel
Posted

Thanks everyone,

I didn't think there was any point and I have already started on my new lifestyle. Wrapping your head around all this takes a little while. But I am hoping that although I didn't have much for symptoms that I will notice a big improvement anyway.

I personally highly recommend the scope to ensure there are no other problems going on. In fact, my doctor wanted me to have both the gastroscopy and colonoscopy. I am glad I had both. They showed nothing else was wrong. But my story is different than many. Although my bloodwork highly indicated Celiac, I had a hard time believing it as I felt so good on gluten! Lots of energy, no malabsorption issues, no tummy troubles, and so on. My doctor was surprised as well. But I still went gluten-free for 5 months. Once I had the scopes and celiac disease was confirmed I was absolutely convinced and immediately went off gluten. Plus I needed to the scope and surgeon's letter to allow me to claim medical expenses and be issued a celiac card which allows discounts at certain gluten-free stores. It was a presence of mind thing for me and definitive proof that I needed to go gluten-free.

cassP Contributor
cassP
Posted

I personally highly recommend the scope to ensure there are no other problems going on. In fact, my doctor wanted me to have both the gastroscopy and colonoscopy. I am glad I had both. They showed nothing else was wrong. But my story is different than many. Although my bloodwork highly indicated Celiac, I had a hard time believing it as I felt so good on gluten! Lots of energy, no malabsorption issues, no tummy troubles, and so on. My doctor was surprised as well. But I still went gluten-free for 5 months. Once I had the scopes and celiac disease was confirmed I was absolutely convinced and immediately went off gluten. Plus I needed to the scope and surgeon's letter to allow me to claim medical expenses and be issued a celiac card which allows discounts at certain gluten-free stores. It was a presence of mind thing for me and definitive proof that I needed to go gluten-free.

ya- people actually have no idea that most celiacs do NOT have gut symptoms.. it's surprising, yes- but that's what studies are showing. and most docs dont understand that either. i want my dad tested, but he wont do it. i even told our PCP that i believe he has it- but she said: "does he have any stomach problems?".. i said: "no, but most celiacs dont"... she just looked at me like i was the town idiot. my dad has had every skin condition, and anxiety, and sleep apnea... i KNOW he has it- :( and he wont address it :( i dont want him to slip into dementia like his parents :(

sorry, didnt mean to make it all about me

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

Celiac.com Sponsor (A8-M):


love2travel Mentor
love2travel
Posted

ya- people actually have no idea that most celiacs do NOT have gut symptoms.. it's surprising, yes- but that's what studies are showing. and most docs dont understand that either. i want my dad tested, but he wont do it. i even told our PCP that i believe he has it- but she said: "does he have any stomach problems?".. i said: "no, but most celiacs dont"... she just looked at me like i was the town idiot. my dad has had every skin condition, and anxiety, and sleep apnea... i KNOW he has it- :( and he wont address it :( i dont want him to slip into dementia like his parents :(

sorry, didnt mean to make it all about me

No apologies needed! I know what you mean - my Mom exhibits nealry every single symptom in the various lists I have seen but does not want to know if she has celiac disease. She is a terrible cook (sorry, Mom!) and cross contamination issues would be very challenging for her. It is difficult being informed about a disease or disorder, living with it, recognizing symptoms in others and not being able to do a single thing about it. :( I must say I am extremely thankful for my doctor who is very knowledgeable about celiac disease.

zimmer Rookie
zimmer
Posted

Hi,

I just got my tTG results yesterday with 0-20 being normal and I am 193. Also a family history of Celiacs (my brother and niece)

I was wondering is there any point in getting scoped?

I have very few symptoms if any. But with numbers that high my body is obviously reacting.

Thanks

I'm like you - very few symptoms but positive TTg (mine was 31 on a scale of 0-15, so not as high as yours). I've decided against the scope (for now). The treatment is the same regardless of the outcome of the scope. And from reading many many sources, I'm convinced that my blood test results mean no more gluten for me!

What really made me decide, however, was that if I had a positive clinical diagnosis as a result of a biopsy, then "Celiac Disease" would become a part of my medical record and I could be denied health insurance, and / or life insurance.

I understand that there could be other issues that a scope would reveal, but for me personally, I have nothing going on at the moment. My PCP tested me along with regular check-up lab work basically on a hunch because I've had off and on symptoms for my whole life. The GI I went to practically shrugged me off and said he would never have tested me in the first place. I'm glad my PCP did have the insight to test, otherwise I would not know!

Jungle Rookie
Jungle
Posted
  • Author

Thanks for the opinions,

I think I'm going to skip the scope as the wait time for that referral would likely be about 6 months and I would do the same with my diet either way. I won't need to worry so much about health insurance as I am Canadian. But I hadn't thought about the life insurance.

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. SamAlvi
      - SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      High TTG-IgG and Normal TTG-IgA

      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing...
    2. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Blood tests for thiamine are unreliable. The nutrients from your food get absorbed into the bloodstream and travel around the body. So, a steak dinner can falsely raise thiamine blood levels in the following days. Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte...
    3. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine?
    4. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine. Legumes (beans) do contain thiamine. Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and Cobalamine B12 are mostly found in meats. Meat, especially organ...
    5. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc. Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food....
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,871
    • Most Online (within 30 mins)
      7,748
    Koyanna
    Newest Member
    Koyanna
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • SamAlvi
      High TTG-IgG and Normal TTG-IgA

      By SamAlvi · Posted

      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
×
×
  • 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.