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

Is An Endoscopy Really Necessary?

NurseSati

Recommended Posts

NurseSati Newbie
NurseSati
Posted

Hello,

I had the ttg and another test done that say yes I have celiac. I understand that this is not diagnostic but indicative. My symptoms are: terrible constipation, gas, fatigue, foggy head feeling after eating gluten, hair falling out in clumps, and stomach swelling after gluten meal. I pretty much am sure I have it and ready to move to a gluten free diet.

 

My doctor referred me to a gastroenterologist. I called the office and asked what is the point? I am a nurse, I can research and change my diet appropriately. Then I figured out they want me to have an endoscopy... which I know is definitive. Well I have good insurance. But my parents are really agianst any other testing. They have gone gluten free and want me not to go to the doctor anymore and follow suit. Which I am fine with but I want to at least connect with a GI about possible yearly blood tests or something so I know I am OK because my symptoms come and go and are really vague.

 

Anyways... Is this test really necessary. My parents will make me pay for whatever is not covered by insurance so I will be charging it.

 

Thanks,

Whitney

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

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted

Hello,

I had the ttg and another test done that say yes I have celiac. I understand that this is not diagnostic but indicative. My symptoms are: terrible constipation, gas, fatigue, foggy head feeling after eating gluten, hair falling out in clumps, and stomach swelling after gluten meal. I pretty much am sure I have it and ready to move to a gluten free diet.

My doctor referred me to a gastroenterologist. I called the office and asked what is the point? I am a nurse, I can research and change my diet appropriately. Then I figured out they want me to have an endoscopy... which I know is definitive. Well I have good insurance. But my parents are really agianst any other testing. They have gone gluten free and want me not to go to the doctor anymore and follow suit. Which I am fine with but I want to at least connect with a GI about possible yearly blood tests or something so I know I am OK because my symptoms come and go and are really vague.

Anyways... Is this test really necessary. My parents will make me pay for whatever is not covered by insurance so I will be charging it.

Thanks,

Whitney

I don't understand the parent comment. You are a grown-up with your own insurance, so I think it is really your choice. I wish your parents would have gotten themselves tested before going gluten-free.

Any doctor can do the f/ up blood test - just re- testing to se if the antibodies are coming down. You don't need a GI for that. You might want to read on the univ of Chicago Celiac center for more info about why an endoscopy is necessary. If you decide on the endo, you will want to keep eating gluten.

Open Original Shared Link

NoGlutenCooties Contributor
NoGlutenCooties
Posted

Hi NurseSati and Welcome to the forum!

 

Whether or not to get an endoscopy and biopsy is a personal decision and one only you can make for yourself.  However, there is an additional benefit to having the biopsy, as they will test for other possible issues that could be either causing your symptoms or going on in addition to the Celiac.

Gemini Experienced
Gemini
Posted

Hello,

I had the ttg and another test done that say yes I have celiac. I understand that this is not diagnostic but indicative. My symptoms are: terrible constipation, gas, fatigue, foggy head feeling after eating gluten, hair falling out in clumps, and stomach swelling after gluten meal. I pretty much am sure I have it and ready to move to a gluten free diet.

 

My doctor referred me to a gastroenterologist. I called the office and asked what is the point? I am a nurse, I can research and change my diet appropriately. Then I figured out they want me to have an endoscopy... which I know is definitive. Well I have good insurance. But my parents are really agianst any other testing. They have gone gluten free and want me not to go to the doctor anymore and follow suit. Which I am fine with but I want to at least connect with a GI about possible yearly blood tests or something so I know I am OK because my symptoms come and go and are really vague.

 

Anyways... Is this test really necessary. My parents will make me pay for whatever is not covered by insurance so I will be charging it.

 

Thanks,

Whitney

Actually ,the biopsy is not definitive.  You could still have a negative biopsy, with positive bloodwork.  It all depends if there is enough damage to your small intestine yet for them to find.  If you have a complete Celiac panel done and the tTg plus the EMA are positive, then you have a diagnosis for Celiac.  tTg can be elevated for other reasons besides Celiac but having the additional positive EMA is a slam dunk for Celiac.  I would suggest having the full panel done before you do anything else.

Triomam Rookie
Triomam
Posted

Actually ,the biopsy is not definitive.  You could still have a negative biopsy, with positive bloodwork.  It all depends if there is enough damage to your small intestine yet for them to find.  If you have a complete Celiac panel done and the tTg plus the EMA are positive, then you have a diagnosis for Celiac.  tTg can be elevated for other reasons besides Celiac but having the additional positive EMA is a slam dunk for Celiac.  I would suggest having the full panel done before you do anything else.

I agree...the search for answers is complex.... My TTG IGA is over 300..... But a biopsy said negative. Yet the difference gluten-free is startling! I'm not yet back to fully well...but compared to how I've been its unrecognisable.....

Good luck

nvsmom Community Regular
nvsmom
Posted

Yep, I skipped the biopsy because I had positive tTG IgA and EMA IgA. I looked at the specificity of those tests and decided that was good enough for me. Plus, I knew that the biopsies are not perfect and have heard too many stories about people who doubted their diagnosis just because one out of three tests (the biopsy) was negative.

skelly247 Rookie
skelly247
Posted

I decided to forgo the endo because I react badly to anesthesia and my symptoms and blood work were enough for me.  I was mildly positive for 2 of the tests despite being IgA deficient and only on gluten for 2 weeks as well as having multiple vitamin deficiencies, some severe (my vitamin D levels were almost undetectable) in addition to a family history of various autoimmune conditions including type 1 diabetes, crohns, colitis and alopecia (all within the past 2 generations).  I don't need the endo to confirm that I shouldn't be eating gluten, the symptoms I get when I eat gluten are enough to do that for me.  If your symptoms go away when you take out gluten (and both of your parents feel better without gluten too), then I would say and endo is not a necessity, positive bloodwork is enough.  That being said, if you don't believe your diagnosis without an endoscopy (some people don't) and won't keep yourself off gluten without it, you should get it done so you can remind yourself of how much it is hurting you even if you can't see it all the time. 
 

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

Celiac.com Sponsor (A8-M):


larry mac Enthusiast
larry mac
Posted

Yep, I skipped the biopsy because I had positive tTG IgA and EMA IgA. I looked at the specificity of those tests and decided that was good enough for me. Plus, I knew that the biopsies are not perfect and have heard too many stories about people who doubted their diagnosis just because one out of three tests (the biopsy) was negative.

First I've heard of that. Where did you read that one out of three are negative? Are you referring to the visual part of the endoscopy that examines your villi, or the biopsy samples?

 

And what about the people who have doubted their own self-diagnosis because they didn't get a biopsy. Not to mention, you may not be taken seriously is you just self-diagnose.

 

best regards, larry mac 

notme Experienced
notme
Posted

First I've heard of that. Where did you read that one out of three are negative? Are you referring to the visual part of the endoscopy that examines your villi, or the biopsy samples?

 

And what about the people who have doubted their own self-diagnosis because they didn't get a biopsy. Not to mention, you may not be taken seriously is you just self-diagnose.

 

best regards, larry mac 

one out of the three tests for celiac dx:(1)  tTG IgA, (2)EMA IgA and (3)biopsy.

kareng Grand Master
kareng
Posted

First I've heard of that. Where did you read that one out of three are negative? Are you referring to the visual part of the endoscopy that examines your villi, or the biopsy samples?

 

And what about the people who have doubted their own self-diagnosis because they didn't get a biopsy. Not to mention, you may not be taken seriously is you just self-diagnose.

 

best regards, larry mac 

 

 

one out of the three tests for celiac dx:(1)  tTG IgA, (2)EMA IgA and (3)biopsy.

 

 

I think that is what she said, too.  

nvsmom Community Regular
nvsmom
Posted

First I've heard of that. Where did you read that one out of three are negative? Are you referring to the visual part of the endoscopy that examines your villi, or the biopsy samples?

 

And what about the people who have doubted their own self-diagnosis because they didn't get a biopsy. Not to mention, you may not be taken seriously is you just self-diagnose.

 

best regards, larry mac

Sorry. I did not make that very clear, did I? I did mean that it is not unusual to have negative tests (like a biopsy) with other positive tests (like the tTG IgA and EMA IgA). Sometimes it happens in reverse with a positive biopsy and negative blood tests. I've never read that number anywhere, it's just an observation of many people's experiences that I have witnessed on this board over the last couple of years.

It is not unusual for there to be no visible damage to a celac's intestines. It seems to be the norm that damage is usually only seen on the biopsy. I have never heard a case, that I remember, of only visible damage with a fine biopsy.

As for self diagnosis and people asking it seriously, I think that is a larger factor for people who are dependent on others for their food - like kids. As an adult, I have met many people who did not take my food requirements seriously. It is annoying but not a problem as I bring my own food places. What others think doesn't make much of a difference to how I treat this disease. In the long run, it is all up to us.

Best wishes.

NurseSati Newbie
NurseSati
Posted
  • Author

Thanks everybody for your input it was really helpful. I decided to go through with the endoscopy biopsy. My dad is eating gluten again and going to have the blood test soon. The possibility of him having celiac seemed to make him rethink the biopsy thing. He said if blood work came back positive he would still want the biopsy. So they are on board. I think that it will help me not doubt the diagnosis. Plus I take a lot of nsaids for an injured back, and have wondered if I have an ulcer. maybe that is something they will see as well. Thanks again!

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. Wheatwacked
      - Wheatwacked replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      Supplements for those Diagnosed with Celiac Disease

      Raising you vitamin D will increase absorption of calcium automatically without supplementation of calcium. A high PTH can be caused by low D causing poor calcium absorption; not insuffient calcium intake. With low D your body is not absorbing calcium from your food so it steals it from your bones. Heart has priority over bone. I've been taking 1...
    2. knitty kitty
      - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      results from 13 day gluten challenge - does this mean I can't have celiac?

      @catnapt, Wheat germ has very little gluten in it. Gluten is the carbohydrate storage protein, what the flour is made from, the fluffy part. Just like with beans, there's the baby plant that will germinate ("germ"-inate) if sprouted, and the bean part is the carbohydrate storage protein. Wheat germ is the baby plant inside a kernel of wheat...
    3. knitty kitty
      - knitty kitty replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      Supplements for those Diagnosed with Celiac Disease

      Hello, @asaT, I'm curious to know whether you are taking other B vitamins like Thiamine B1 and Niacin B3. Malabsorption in Celiac disease affects all the water soluble B vitamins and Vitamin C. Thiamine and Niacin are required to produce energy for all the homocysteine lowering reactions provided by Folate, Cobalamine and Pyridoxine. Weight...
    4. Florence Lillian
      - Florence Lillian replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      11

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Hi Jane: You may want to try the D3 I now take. I have reactions to fillers and many additives. Sports Research, it is based in the USA and I have had no bad reactions with this brand. The D3 does have coconut oil but it is non GMO, it is Gluten free, Soy free, Soybean free and Safflower oil free. I have a cupboard full of supplements that did not agree...
    5. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      results from 13 day gluten challenge - does this mean I can't have celiac?

      highly unlikely NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,356
    • Most Online (within 30 mins)
      7,748
    JAGAPG
    Newest Member
    JAGAPG
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Wheatwacked
      Supplements for those Diagnosed with Celiac Disease

      By Wheatwacked · Posted

      Raising you vitamin D will increase absorption of calcium automatically without supplementation of calcium.  A high PTH can be caused by low D causing poor calcium absorption; not insuffient calcium intake.  With low D your body is not absorbing calcium from your food so it steals it from your bones.  Heart has priority over bone. I've been taking 10,000 IU D3 a day since 2015.  My doctor says to continue. To fix my lactose intolerance, lots of lactobacillus from yogurts, and brine fermented pickles and saurkraut and olives.  We lose much of our ability to make lactase endogenosly with maturity but a healthy colony of lactobacillus in our gut excretes lactase in exchange for room and board. The milk protein in grass fed milk does not bother me. It tastes like the milk I grew up on.  If I drink commercial milk I get heartburn at night. Some experts estimate that 90% of us do not eat Adequite Intake of choline.  Beef and eggs are the principle source. Iodine deficiency is a growing concern.  I take 600 mcg a day of Liquid Iodine.  It and NAC have accelerated my healing all over.  Virtually blind in my right eye after starting antihypertensive medication and vision is slowly coming back.  I had to cut out starches because they drove my glucose up into the 200+ range.  I replaced them with Red Bull for the glucose intake with the vitamins, minerals and Taurine needed to process through the mitochodria Krebs Cycle to create ATP.  Went from A1c 13 down to 7.9.  Work in progress. Also take B1,B2,B3,B5,B6. Liquid Iodine, Phosphatidyl Choline, Q10, Selenium, D and DHEA.     Choline supplemented as phosphatidylcholine decreases fasting and postmethionine-loading plasma homocysteine concentrations in healthy men +    
    • knitty kitty
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By knitty kitty · Posted

      @catnapt, Wheat germ has very little gluten in it.  Gluten is  the carbohydrate storage protein, what the flour is made from, the fluffy part.  Just like with beans, there's the baby plant that will germinate  ("germ"-inate) if sprouted, and the bean part is the carbohydrate storage protein.   Wheat germ is the baby plant inside a kernel of wheat, and bran is the protective covering of the kernel.   Little to no gluten there.   Large amounts of lectins are in wheat germ and can cause digestive upsets, but not enough Gluten to provoke antibody production in the small intestines. Luckily you still have time to do a proper gluten challenge (10 grams of gluten per day for a minimum of two weeks) before your next appointment when you can be retested.    
    • knitty kitty
      Supplements for those Diagnosed with Celiac Disease

      By knitty kitty · Posted

      Hello, @asaT, I'm curious to know whether you are taking other B vitamins like Thiamine B1 and Niacin B3.  Malabsorption in Celiac disease affects all the water soluble B vitamins and Vitamin C.  Thiamine and Niacin are required to produce energy for all the homocysteine lowering reactions provided by Folate, Cobalamine and Pyridoxine.   Weight gain with a voracious appetite is something I experienced while malnourished.  It's symptomatic of Thiamine B1 deficiency.   Conversely, some people with thiamine deficiency lose their appetite altogether, and suffer from anorexia.  At different periods on my lifelong journey, I suffered this, too.   When the body doesn't have sufficient thiamine to turn food, especially carbohydrates, into energy (for growth and repair), the body rations what little thiamine it has available, and turns the carbs into fat, and stores it mostly in the abdomen.  Consuming a high carbohydrate diet requires additional thiamine to process the carbs into energy.  Simple carbohydrates (sugar, white rice, etc.) don't contain thiamine, so the body easily depletes its stores of Thiamine processing the carbs into fat.  The digestive system communicates with the brain to keep eating in order to consume more thiamine and other nutrients it's not absorbing.   One can have a subclinical thiamine insufficiency for years.  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so the symptoms can wax and wane mysteriously.  Symptoms of Thiamine insufficiency include stunted growth, chronic fatigue, and Gastrointestinal Beriberi (diarrhea, abdominal pain), heart attack, Alzheimer's, stroke, and cancer.   Thiamine improves bone turnover.  Thiamine insufficiency can also affect the thyroid.  The thyroid is important in bone metabolism.  The thyroid also influences hormones, like estrogen and progesterone, and menopause.  Vitamin D, at optimal levels, can act as a hormone and can influence the thyroid, as well as being important to bone health, and regulating the immune system.  Vitamin A is important to bone health, too, and is necessary for intestinal health, as well.   I don't do dairy because I react to Casein, the protein in dairy that resembles gluten and causes a reaction the same as if I'd been exposed to gluten, including high tTg IgA.  I found adding mineral water containing calcium and other minerals helpful in increasing my calcium intake.   Malabsorption of Celiac affects all the vitamins and minerals.  I do hope you'll talk to your doctor and dietician about supplementing all eight B vitamins and the four fat soluble vitamins because they all work together interconnectedly.  
    • Florence Lillian
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Florence Lillian · Posted

      Hi Jane: You may want to try the D3 I now take. I have reactions to fillers and many additives. Sports Research, it is based in the USA and I have had no bad reactions with this brand. The D3 does have coconut oil but it is non GMO, it is Gluten free, Soy free, Soybean free and Safflower oil free.  I have a cupboard full of supplements that did not agree with me -  I just keep trying and have finally settled on Sports Research. I take NAKA Women's Multi full spectrum, and have not felt sick after taking 2 capsules per day -  it is a Canadian company. I buy both from Amazon. I wish you well in your searching, I know how discouraging it all is. Florence.  
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      highly unlikely  NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean ground turkey but not much) I was off dairy for years but recently had to add back plain yogurt to meet calcium needs that I am not allowed to get from supplements (I have not had any problem with the yogurt)   I eat almost no processed foods. I don't eat out. almost everything I eat, I cook myself I am going to keep a food diary but to be honest, I already know that it's wheat products and also barley that are the problem, which is why I gradually stopped eating and buying them. When I was eating them, like back in early 2024, when I was in the middle of moving and ate out (always had bread or toast or rolls or a sub or pizza) I felt terrible but at that time was so busy and exhausted that I never stopped to think it was the food. Once I was in my new place, I continued to have bread from time to time and had such horrible joint pain that I was preparing for 2 total knee replacements as well as one hip! The surgery could not go forward as I was (and still am) actively losing calcium from my bones. That problem has yet to be properly diagnosed and treated   anyway over time I realized that I felt better when I stopped eating bread. Back at least 3 yrs ago I noticed that regular pasta made me sick so I switched to brown rice pasta and even though it costs a lot more, I really like it.   so gradually I just stopped buying and eating foods with gluten. I stopped getting raisin bran when I was constipated because it made me bloated and it didn't help the constipation any more (used to be a sure bet that it would in the past)   I made cookies and brownies using beans and rolled oats and dates and tahini and I LOVE them and have zero issues eating those I eat 1 or more cans of beans per day easily can eat a pound of broccoli - no problem! Brussels sprouts the same thing.   so yeh it's bread and related foods that are clearly the problem  there is zero doubt in my mind    
×
×
  • 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.