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

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
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      128,181
    • Most Online (within 30 mins)
      7,748
    ViRose
    Newest Member
    ViRose
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.7k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Wheatwacked
      Testing

      By Wheatwacked · Posted

      Once you have removed the inflammatories, it is time to focus on the deficiencies.  A lot of them not specific to Celiac, but deficiency in them elicits symptoms associated with Celiac. According to research, celiac disease tends to be more prevalent in urban areas compared to rural areas.  Same is true with airborne viruses.  Because urban residents get less sunlight.  To top it off we use lotion and gear to block the little light there is.  This compremises the vitamin D blood level.  A virus attack further lowers vitamin D and the immune system loses control over the Celiac genes and they go into acute symptoms. 40% to 75% depending depending on country are vitamin D deficient. 50% do not eat the Adequit Intake for potassium (4700 mg a day) 90% do n ot eat the Adequit Intake for Choline. Iodine intake since 1970 had dropped 50%.  The western diet is typically excessive in omega 6 fatty acid compared to omega 3.  Above 14:1 by some estimates.  So they sell us expensive, processed oils to compensate.  Anyway after 10 years gluten free myself,  here is what has helped me in just the past few years; once I realized I was at a healing plateau and just GFD would not cut it, and reallized my deficiencies.  Most recently, I started a statin which I only took for two weeks before it started to cripple me.   Got a prescription for Nicotinic Acid to 2000 and am more flexible now Plus HDL went 29 to 44, eGFR from 55 to 79. I also learned if the pharmacist gets a prescription for Niacin that it is dealer's choice whether you get Nicotinic Acid or Niacinimide.  And it comes out of a regular vitamin manufacturer.   "likely deficiencies and what I take to boost my intake (I get anorexic at the drop of a hat so I take them to keep me stable):  the ones that helped me the most noticibly Was increasing vitamin D blood level to 80 ng/ml and Iodine to 500 mcg once or twice a day, Thiamine, Choline, and Iodine. 10,000 IU vitamin D 500 mg Thiamine or more Choline Iodine – 600 to 1200 mcg of Liquid Iodine Vitamin B2 helps break down proteins, fats, and carbohydrates. It plays a vital role in maintaining the body's energy supply.  500 mg Nicotinic Acid - increase capillary blood flow, lower cholesterol. I recently started 2000 mg a day instead of a statin which I cannot tolerate. I the first month my HDL went from 29 to 44. eGFR (kidney function) jumped from 55 ti 75. It also has make my whole body less stiff. The ichy, flushing with the first few doses goes away. The non flush forms of vitamin B3 do not work. It is the relaxing of the capillaries and tendons. 500 mg Pantothenic Acid vitamin B5 Omega-3 and Omega-6 Fatty Acids in Vegetables  Eating more of the vegetables low in omega six and high omega 3 can reduce inflammation Whole Milk Vanilla yogurt to which I add 100 grams of raspberrys, black berries and blueberries has lots of probiotics and makes my tummy and body happy. Red Bull has sugar (not high fructose corn syrup) and the vitamins (B2,3,5,6 need to metabolize to ATP energy and Taurine as an antioxident). It is a good source of energy for me because my genetic hyperlipidemia does not process complex carbs well.        
    • trents
      For people with celiac disease and corn intolerance from it: Is salt still okay for most people?

      By trents · Posted

      Gluten-like cross reactions to other foods are from the proteins that make them up. Dextrose is the sugar component found in corn.
    • Ryangf
      For people with celiac disease and corn intolerance from it: Is salt still okay for most people?

      By Ryangf · Posted

      I just found out a few days ago that some salt like table salt contains dextrose that’s derived from corn. I’ve been thinking about getting rid of using table salt and just using my own kosher or Himalayan salt, but tbh I’m reluctant to do it. I’ve cut out a lot of things and I don’t really want to cut out anything else that I’m not sure will effect me…in a super small amount that it might be added to salts to stabilize the iodine. I don’t want to be further alienated when I have to go to a restaurant with my friends. Also most of the items at my house that have salt in it canned food etc. are some of the few quick things I can eat- because I’m not the one paying for the food in my household and i can only ask for so much. I’m not in a place financially where I can get a lot of my specialized items- although my family tries their best to get items I Can actually stand. I get I can bring a my own salt with me at a restaurant and ask for no seasoning but it feels like a lot to me- cause I already check for cross contamination and ask if the food has like a high volume of corn in it like cornstarch etc. I’ve also heard most dextrose is not derived from the Zein (corn gluten) portion of it- so it might be safe- but idk if that’s true. I just wanna know if anyone actually responded to it negatively.
    • Scott Adams
      I’m so confused…

      By Scott Adams · Posted

      For my first couple of years after discovering my celiac disease I also had to avoid cow's milk/casein and eggs, as well as other things, but could tolerate duck eggs and sheep and goat's milk products. I'm not sure if you've tried those, but it could be worth testing them out.
    • knitty kitty
      I’m so confused…

      By knitty kitty · Posted

      Hello, @Kwinkle, How are you doing?   Have you tried adding a Magnesium supplement?   The B Complex vitamins need magnesium to work properly, especially thiamine vitamin B 1.   Magnesium deficiency symptoms and Thiamine deficiency symptoms both include gas and bloating.  Thiamine deficiency symptoms also include loss of appetite and fatigue.   My gas and bloating resolved rather quickly when I took Benfotiamine (a form of thiamine shown to promote intestinal healing) and Magnesium Glycinate in addition to my B 50 Complex (all twice a day plus the following...).   I found Magnesium L-Threonate or Magnesium Taurate are better when taken with a form of thiamine called TTFD (Tetrahydrofurfuryl dusulfide) because all of these cross the blood brain barrier easily, which corrects the loss of appetite, fatigue and anxiety.    Like @Celiacandme said, keeping a food/mood/poo'd journal is a big help in finding problematic foods, and for making sure your diet is not carbohydrate heavy.  If you're eating a lot if processed gluten free facsimile foods, be aware they do not have vitamins and minerals added to them like their gluten containing counterparts.  For every 1000 kcal of carbohydrates, we need an extra 500 mg of thiamine to turn them into energy and not store them as fat.   Let us know how you're doing!
×
×
  • Create New...