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

How Important Is An Endoscopy If Blood Test Is Positive?


tommysmommy

Recommended Posts

tommysmommy Newbie

My son is 21 months old. In June he was the picture of a happy, healthy, chubby baby! Then he began vomitting regularly which turned into ongoing diarrhea. In less than two months, he lost 1/3 of his body weight, totally weak and was deteriorating fast. Many doc visits, 3 visits to a "good" peds er, admitted for 3 days....and after endless blood work, necessary iv fluids, 2 xrays, an ultrasound and Ct scan....best they could tell me was it was a virus, give him Lots of high calorie foods and bread, he would improve with time. He didn't. Getting an appt with the peds gi specialist was torture. I kept digging myself and was convinced he had more celiac symptoms than viral symptoms. I called to GI office to ask if it could be celiac (I knew it was one of the many things they tested for) and I was told "NO". I took him off gluten anyway and he improved dramatically overnight and kept improving. A week later, finallly had our gi appt, only to find out the bloodwork showed he DID have celiac but no one noticed that report.

Now we are scheduled for an endoscopy. Is this really necessary? I hate to put him thru anymore procedures. He is improving rapidly. I know it is celiac and dairy doesn't agree with him but he is eating constantly, gaining weight and full of energy....in 2 weeks gluten-free.

I have no respect for these "specialists" and happy to be the one in control.

Can anyone give me a good reason for going ahead with the endoscopy at this point?


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

Talk to your ped. He had positive tests on blood work and has responded well to the diet. To have an endo now you would likely be told to put him on a gluten challenge and he may react badly to that. Your doctor may give the 'official' diagnosis he will need for school based on the positive bloods and response to the diet.

mommida Enthusiast

An endoscopy done before starting the gluten free diet could have given a clear picture of the amount of damage that has been done and needs to heal. It could have also diagnosed or ruled out any other disorder(s). It could rule out congenital deformity of the upper GI track.

I would think a gluten challenge is too risky for your child's health right now. See if the doctor can diagnose with the blood work and possibly genetic test (still not really 98% accurate ~ you will hear that from the Prometheus labs representitives if you should ever have a question about "inconsistant" results.

We didn't have the endoscopy when my daughter was 15-17 months old. She too was hospitalized because of dehydration trying to eat gluten through the testing. Blood test was positive, used gluten free diet to get her healthy and out of the hospital. Doctors would not do scope because she was termed too ill at the time. Genetic testing was positive for both Celiac genes.

She was fine, until she was 6. It seemed like she was getting the same Celiac symptoms, but worse. She started vomitting up to 5 times a day. She was then scoped and diagnosed with Eosinophilic Esophagitus, EoE.

EoE has "triggers". Gluten can be a "trigger" for EoE and there is now a proven connection between Celiac and EoE.

icm Apprentice

EoE has "triggers". Gluten can be a "trigger" for EoE and there is now a proven connection between Celiac and EoE.

Isn't that a condition where you can't eat anything? I'm terribly shocked that gluten could trigger this...

mommida Enthusiast

EoE, can be a different experience per patient.

Something triggers the production of eosinophils (white blood cells that have a spearlike attack, usually reserved for parasite infection)

once the eosonophils are activated, they are actively damaging (normal healthy tissue) for 12 days.

in the case of EoE the eosinophils damage the tissue of the esophagus. Deep furrows, schatki rings , food can be stuck in the esophagus from the damage, and patients may need surgical dilation

Some patients do need to be put on feeding tubes. If you can figure out food "Triggers" and avoid them, you eliminate the damage.

The top suspects for triggers are the top 8 allergens, gluten, and peas. Unfortunately there seems to be an airborn allergen connection. Many patients are diagnosed late summer to fall (as symptoms seem to "flare" seasonally)

New patients diagnosed with EoE are now reccomended to be tested for Celiac for the known connection between the 2 conditions.

There is a list of disorders that can cause the same symptoms as Celiac, some are more common to be connected to Celiac. Testing can help rule out other possible conditions.

GottaSki Mentor

I'd say Tommy's Mommy is smart to question the need of the endoscopy. Positive blood plus improved health by removing gluten = Celiac Disease. Given his reaction to gluten I don't see a benefit to adding it back into his diet to confirm what you already know to be true. Additionally, since he has already had improvement gluten-free - the endo may not be accurate even with a gluten challenge.

Good Luck :)

SensitiveMe Rookie

I cannot give you a good reason for an endoscopy and think you should stick to your Mommy instincts. If you want to demand a good reason from the doctors then go ahead and stick to your Mommy guns and demand it.

I was in a similar situation once but is was not over celiac or gluten. My daughter was diagnosed with having Berget's syndrome (it is a benign condition in which the kidneys put out protein in the urine, and sometimes there is visible blood in the urine). There is no treatment for it. She was 10 years old and after diagnosis we were referred to a kidney specialist. The specialist insisted it was necessary to take her to the operating room and under general anesthesia take a kidney biopsy to confirm the diagnosis. My Mommy instincts said no and after talking with her regular doctor I refused because I did not feel confirmation of a previously diagnosed condition was sufficient reason for any biopsy.


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



Celiac.com Sponsor (A8-M):



Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Florence Lillian replied to Jay Heying's topic in Gluten-Free Foods, Products, Shopping & Medications
      5

      Celiac friendly probiotics

    2. - slkrav posted a topic in Introduce Yourself / Share Stuff
      0

      Gluten free beer ?

    3. - cristiana replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      16

      Ibuprofen

    4. - Mari replied to KathyR37's topic in Coping with Celiac Disease
      5

      New here

    5. - Colleen H replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      16

      Ibuprofen


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,880
    • Most Online (within 30 mins)
      7,748

    Loveruss
    Newest Member
    Loveruss
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Florence Lillian
      In response to your questions regarding probiotics.  I have had Celiac for 40 years.  Stomach issues: digestion, IBS to chronic constipation, bloat after eating anything.  I was unable to eat a healthy variety of foods, tried probiotics supplements - some made me worse, others made no difference.  After reading about people with Crones, IBS, etc, who made their own probiotics I started making Milk Kefir: not water Kefir. There are 10 probiotics in milk KEFIR. After 3 weeks I was able to eat more, no gas, no IBS.  If you have a computer just ask for videos on making milk Kefir. I branched out and make my own Kombucha for even more probiotics. I do not make my yogurt because there are only about four probiotics in that. I started this when I was 82 and I still make my own Kefir and Kombucha. My stomach issues were fixed with the Milk Kefir alone. If you decide to try making it, make certain you order MILK GRAINS. The finished product tastes a bit like Buttermilk. I hope this helps in your journey to good health.
    • slkrav
      Help me out here. Lauren Dam gluten-free beer from Spain is listed as gluten free. Yet its made from Barley Malt. I thought barley and any form had gluten. Anybody have any more information about it?
    • cristiana
      Ferritin levels.  And see what your hemoglobin looks like too, that will tell you if you are anemic?  You can have 'low normal' levels that will not be flagged by blood tests.  I had 'low normal' levels, my lab reading was. c12, just over what was considered normal, but I had small benign lesion on my tongue, and sometimes a sore mouth, and a consultant maxillofacial ordered an iron infusion for me as he felt my levels were too low and if he  raised them to 40, it would help.   Because you are not feeling 100% it might be worth looking at your levels, then discussing with your doctor if they are low normal.  But I stress, don't supplement iron without your levels being monitored, too much is dangerous.
    • Mari
      Hi Katht -  I sympathize with your struggles in following a gluten-free diet and lifestyle. I found out that I had Celiac Disease a few months before I turned 70. I just turned 89 and it has taken me almost 20 years to attain a fairly normal intestinal  function. I also lost a lot of weight, down to 100 lb. down from about 140 lb. What Trents wrote you was very true for me. I am still elimination foods from my diet. One person suggested you keep a food diary and that is a good idea but it is probably best just to do an elimination diet. There are several ne and maybe one for celiacs. I used one for a while and started with plain rice and zucchini and then added back other foods to see if I reacted or not. That helped a great deal but what I did not realise that it would only very small amounts of some foods to cause inflammation in my intestine. Within the last few years I have stopped eating any trace amounts of hot peppers, corn and soy(mostly in supplements) and nuts, (the corn in Tylenol was giving me stomach aches and the nuts were causing foot pains). Starting an elimination diet with white rice is better than brown rice that has some natural toxins. In addition it is very important to drink sufficient plain water. You can find out how much to drink for your height and weight online. I do have difficulty drinking 48 ounces of water but just recently have found an electrolyte supplement that helps me stay well hydrated, Adding the water and electrolytes may reduce muscle cramps and gag spams you wrote about. . Also buy some anti-gluten enzyme capsules to take with meals. I use GliadinX advertised here. These are a lot of things to do at one time as they reflect my 20 years of experience. I hope you do what you can manage to do over time. Good luck and take care.
    • Colleen H
      Yes thyroid was tested.. negative  Iron ...I'm. Not sure ... Would that fall under red blood count?  If so I was ok  Thank you for the detailed response..☺️
×
×
  • 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.