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New Here! Any Point In The Scope


Jungle

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Jungle Rookie

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


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T.H. Community Regular

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

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

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

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

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

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


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love2travel Mentor

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

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

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.

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    • xxnonamexx
      What about digestive enzymes that I hear help? I take align 5x probiotics daily.
    • Samanthaeileen1
      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
    • Wheatwacked
      My son was diagnosed when he was weaned in 1976 after several endoscopies.  Given your two year old's symptoms and your family history and your pediatrition advocating for the dx, I would agree.  Whether an endoscopy is positive or negative is irrelevant.   That may happen even with endoscopy.  Pick your doctors with that in mind. In the end you save the potential trauma of the endoscopy for your baby.   Mine also had really nasty poop.  His doctor started him on Nutramigen Infant because at the time it was the only product that was hypo allergenic and had complete nutrition. The improvement was immediate.
    • RMJ
      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
    • Samanthaeileen1
      here are the lab ranges.  Normal ranges for tissue transglutaminase are: <15.0 Antibody not detected > or = 15.0 Antibody detected normal for endomysial antibody is < 1.5. So she is barely positive but still positive. 
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