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Endoscopy Question


Raynee

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Raynee Rookie

I have a colonoscopy and EGD scheduled next week. My question is do you have to have a biopsy of small intestine to determine if you have celiac or can the doctor tell clinically if there is damage during the procedure. Any input would be appreciated. Do the take random biopsies normally of your intestine during an endoscope as a normal procedure or only if they suspect celiac. Do I have to ask I guess is my question. I am still waiting for the results from the blood work.

Thanks!


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psawyer Proficient

The damage from celiac disease is usually not visible to the eye. In cases of extreme atrophy, the doctor may be able to see something, but even then, the biopsy will confirm that what the doctor saw was villous atrophy caused by celiac disease.

Multiple samples should be taken because the damage may not be evenly spread--you can get some normal samples mixed in with the ones that show damage. That is the reason that a negative can not be considered absolute--the samples could all have missed the damage, particularly in the early stages.

Roda Rising Star

As the above person stated. I had one biopsy taken from my stomach to check for H-pylori and 6 random biopsy samples from the first part of the small bowel. My doctor told me that my lining of the small bowel looked a little smooth and scalloped, but had to wait for the biopsy for comfirmation. He really did not think it was going to be a positive biopsy and it turned out it was. Other things can cause damage to the lining also. As for the colonoscopy it's always a good idea to check that end out too. I had a positive hemocult test. They found a polyp and removed it, so I'm glad I had it done too.

Raynee Rookie
I have a colonoscopy and EGD scheduled next week. My question is do you have to have a biopsy of small intestine to determine if you have celiac or can the doctor tell clinically if there is damage during the procedure. Any input would be appreciated. Do the take random biopsies normally of your intestine during an endoscope as a normal procedure or only if they suspect celiac. Do I have to ask I guess is my question. I am still waiting for the results from the blood work.

Thanks!

Thanks for your replies. I did just find out my celiac sprue test was negative so now I am very discouraged! I highly doubt he will do any biopsies. In the meantime, still looking six months pregnant going on six years now. Fatigue! Fatigue and multiple other symptoms. See first blog. Anyway, I am going to go ahead an start a gluten free diet. I am afraid if I don't feel better within a couple of weeks it will be difficult for me to comply. In the meantime, new symptom - headache (dull) after each meal??????

I hate doctors!!! Nothing but symptomatologists!

Roda Rising Star

I would still try and pursue the egd and colonoscopy. Even if celiac is not it (you can have negative blood work and positive biopsy) other things could be going on inside. I would stay on gluten until you can find out if you can have the tests or find a different doc.

Foxfire62 Newbie
I have a colonoscopy and EGD scheduled next week. My question is do you have to have a biopsy of small intestine to determine if you have celiac or can the doctor tell clinically if there is damage during the procedure. Any input would be appreciated. Do the take random biopsies normally of your intestine during an endoscope as a normal procedure or only if they suspect celiac. Do I have to ask I guess is my question. I am still waiting for the results from the blood work.

Thanks!

I know for a fact that doctors don't always take random biopsies of your intestines as a normal procedure. About 2 years before I was diagnosed, I was scoped, but he didn't even think to look for celiac disease and just checked my stomach. The only reason it was discovered I had celiac disease was because last year I mentioned that I was going to get tested for a wheat allergy, and then he thought about doing a blood panel to check for celiac disease. My tTg levels were 100+. Then he scoped me and took the biopsy, so don't count on it being a normal procedure (unfortunately).

Only a biopsy of the small intestine can diagnose celiac disease 100%. The blood panel can sometimes return a negative, and you can still have the condition. Having a biopsy can also rule out anything that may look like celiac disease but isn't.

Celiac disease starts in the stomach and works its way down the intestinal track. When you heal, you heal backwards, which is why the biopsy is taken from the duodenum. Make sure the doctor takes a biopsy.

Good luck!

Foxfire62 Newbie
Thanks for your replies. I did just find out my celiac sprue test was negative so now I am very discouraged! I highly doubt he will do any biopsies. In the meantime, still looking six months pregnant going on six years now. Fatigue! Fatigue and multiple other symptoms. See first blog. Anyway, I am going to go ahead an start a gluten free diet. I am afraid if I don't feel better within a couple of weeks it will be difficult for me to comply. In the meantime, new symptom - headache (dull) after each meal??????

I hate doctors!!! Nothing but symptomatologists!

Do NOT go on a gluten-free diet until after your biopsy!!! Should you have celiac disease, depending on severity of damage, going on a gluten-free diet can produce inaccurate results.

Stay on a gluten diet until after the procedure.


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    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
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      I found at Disney springs and Disney they have specialist that when told about dietary restrictions they come and talk to you ,explain cross contamination measures tsken and work with you on choices. Its the one place I dont worry once I've explained I have celiac disease.  Thier gluten free options are awesome.
    • Churley
      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
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