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

Help! Freaking Out!

tunibell

Recommended Posts

tunibell Rookie
tunibell
Posted

I just got my repeat endoscopy results back. After 8 months on the diet, my

biopsy revealed "partial healing." My doctor seems to think the celiac should

have totally reversed at this point, and now wants to send me for a CAT Scan to

rule out lymphoma. I am, naturally, freaking out. Anyone go through something

similar???

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

Celiac.com Sponsor (A8-M):


psawyer Proficient
psawyer
Posted

After eight months on a strictly gluten-free diet, I would also expect healing to be complete. The obvious question, to me, is are you sure you are not still getting gluten from somewhere on a regular basis?

verushka1974 Newbie
verushka1974
Posted

It could take up to 1 year on children and 2 years on adults....according to all the books I've read and doctors I have talked to.

But also check all the condiments/seasonings you use...I wasn't getting better and it turned out to be the hidden sources of gluten in the dried oregano, pepper, thyme, parsley, garlic powder and annatto I was using (even though it doesn't say on the label) I called the company and they did mention the cross-contamination issue when making these products. Now I keep it simple..salt only! I know that Mccormick doesn't guarantee their products to be gluten-free because of the cross contamination.

ravenwoodglass Mentor
ravenwoodglass
Posted

I would think also that you are likely still getting gluten somewhere. I don't know why the doctor would think lymphoma because your villi are not healing, he should be thinking that you either are still getting gluten or perhaps are dealing with a rare case of refactory sprue.

Check all your toiletries, shampoos, makeup, pet foods, pet litters, all script meds and OTC meds, generics need to be checked at each refill. Are their gluten eaters in your house? If there is are you taking all the precautions you need to? Do you eat out frequently? That can be a problem for us. Do you eat a lot of processed foods? You may want to go with whole unprocessed foods for a while to help the healing.

tunibell Rookie
tunibell
Posted
  • Author

I seriously don't see how there could be any gluten in what I eat. I'm meticulous to the point of paranoia. As far as medicines, all I ever get is "we don't actively put any gluten in but we can't guarantee that the raw materials are gluten-free." I never eat out, and I replaced half my kitchen after diagnosis. I only use gluten-free shampoo and conditioner; no other body products. I'm stumped.

ravenwoodglass Mentor
ravenwoodglass
Posted

I seriously don't see how there could be any gluten in what I eat. I'm meticulous to the point of paranoia. As far as medicines, all I ever get is "we don't actively put any gluten in but we can't guarantee that the raw materials are gluten-free." I never eat out, and I replaced half my kitchen after diagnosis. I only use gluten-free shampoo and conditioner; no other body products. I'm stumped.

How are you feeling? Are you still having symptoms? If you are have you tried tried eliminating dairy and soy?

orchid1 Newbie
orchid1
Posted

How long had you gone undiagnosed? I had celiac disease for over 10 years and not knowing. Because of my age, being over 50, it took over two years to heal the damaged villi. It can be a slow process for some.

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

Celiac.com Sponsor (A8-M):


tunibell Rookie
tunibell
Posted
  • Author

I'm not sure how long I have had celiac disease; if I had it prior to February 2009, it was completely silent.

CT scan came back normal, thank God!

ravenwoodglass Mentor
ravenwoodglass
Posted

I'm not sure how long I have had celiac disease; if I had it prior to February 2009, it was completely silent.

CT scan came back normal, thank God!

That's great news about the CT!

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,003
    • Most Online (within 30 mins)
      7,748
    JoEllen Ball
    Newest Member
    JoEllen Ball
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Wheatwacked
      Chances of being coeliac

      By Wheatwacked · Posted

      Welcome @JoJo0611. That is a valid question.  Unfortunately the short answer is slim to none.  Be proactive, when the diagnosis process is completed, start GFD.  Remember also that the western diet is deficient in many nutrients that governments require fortification.  Read the side of a breakfast cereal box. Anti-tTG antibodies has superseded older serological tests It has a strong sensitivity (99%) and specificity (>90%) for identifying celiac disease. A list of symptoms linked to Celiac is below.  No one seems to be tracking it, but I suspect that those with elevated ttg, but not diagnosed with Celiac Disease, are diagnosed with celiac disease many years later or just die, misdiagnosed.  Wheat has a very significant role in our economy and society.  And it is addictive.  Anti-tTG antibodies can be elevated without gluten intake in cases of other autoimmune diseases, certain infections, and inflammatory conditions like inflammatory bowel disease. Transient increases have been observed during infections such as Epstein-Barr virus.Some autoimmune disorders including hepatitis and biliary cirrhosis, gall bladder disease. Then, at 65 they are told you have Ciliac Disease. Milk protein has been connected to elevated levels.   Except for Ireland and New Zealand where almost all dairy cows are grass fed, commercial diaries feed cows TMR Total Mixed Rations which include hay, silage, grains and concentrate, protein supplements, vitamins and minerals, byproducts and feed additives. Up to 80% of their diet is food that cannot be eaten by humans. Byproducts of cotton seeds, citrus pulp, brewer’s grains (wheat and barley, rye, malt, candy waste, bakery waste. The wheat, barley and rye become molecules in the milk protein and can trigger tTg Iga in persons suseptible to Celiac. I can drink Grass fed milk, it tastes better, like the milk the milkman delivered in the 50's.  If I drink commercial or Organic milk at bedtime I wake with indigestion.    
    • captaincrab55
      Celiac getting dentures

      By captaincrab55 · Posted

      Can you please share your research about MMA acrylic containing gluten?   I comin up blank about it containing gluten.  Thanks in Advance,  Tom
    • Aretaeus Cappadocia
      Dedicated gluten-free Restaurants in East Bay (near San Francisco):

      By Aretaeus Cappadocia · Posted

      I strongly recommend 2 dedicated gluten free (gluten-free) restaurants in my area (East Bay of San Francisco Bay Area) (2025) -- Life is Sweet Bakery and Café in Danville. I've been a few times with friends and tried multiple entrees and salads. All very good and worth having again. I've also tried a number of their bakery goods. All extremely good (not just "good for gluten-free"). https://lifeissweetbakeryandcafe.com/ -- Kitara Kitchen in Albany (they have additional locations). I've been once and had the "Buritto Bowl". Six individual items plus a sauce. Outstanding. Not just "for gluten-free", but outstanding in its own right. Vibrant flavors, great textures. I can't wait to go back. https://www.kitava.com/location/kitava-albany/  
    • Martha Mitchell
      Celiac getting dentures

      By Martha Mitchell · Posted

      I'm 67 and have been celiac for 17yrs. I had cataract surgery and they put a gluten lens in my eye. Through a lot of research, I found out about MMA acrylic...it contains gluten. It took 6 months for me to find a DR that would remove it and replace it with a gluten-free lens . I have lost some vision in that eye because of it . I also go to a prosthodontist instead of a regular dentist because they are specialized. He has made me a night guard and a few retainers with no issues... where my regular dentist didn't care. I have really bad reactions to gluten and I'm extremely sensitive, even to CC. I have done so much research on gluten-free issues because of these Drs that just don't care. Gluten is in almost everything shampoo, lotion, food, spices, acrylic, medication even communion wafers! All of my Drs know and believe me I remind them often.... welcome to my world!
    • trents
      Chances of being coeliac

      By trents · Posted

      If this applies geographically, in the U.K., physicians will often declare a diagnosis of celiac disease based on the TTG-IGA antibody blood test alone if the score is 10x normal or greater, which your score is. There is very little chance the endoscopy/biopsy will contradict the antibody blood test. 
×
×
  • 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.