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Help! Freaking Out!

tunibell

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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???

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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.

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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!

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    • Wends
      Inconclusive results

      By Wends · Posted

      Be interesting to see the effects of dairy reintroduction with gluten. As well as milk protein sensitivity in and of itself the casein part particularly has been shown to mimic gluten in about 50% of celiacs. Keep us posted!
    • deanna1ynne
      Inconclusive results

      By deanna1ynne · Posted

      She has been dairy free for six years, so she’d already been dairy free for two years at her last testing and was dairy free for the entire gluten challenge this year as well (that had positive results). However, now that we’re doing another biopsy in six weeks, we decided to do everything we can to try to “see” the effects, so we decided this past week to add back in dairy temporarily for breakfast (milk and cereal combo like you said).
    • Gigi2025
      How Come Gluten Didnt Bother Me In Italy

      By Gigi2025 · Posted

      Hi Christiana, Many thanks for your response.  Interestingly, I too cannot eat wheat in France without feeling effects (much less than in the US, but won't indulge nonetheless).  I also understand children are screened for celiac in Italy prior to starting their education. Wise idea as it seems my grandson has the beginning symptoms (several celiacs in his dad's family), but parents continue to think he's just being difficult.  Argh.  There's a test I took that diagnosed gluten sensitivity in 2014 via Entero Labs, and am planning on having done again.  Truth be told, I'm hoping it's the bromine/additives/preservatives as I miss breads and pastas terribly when home here in the states!  Be well and here's to our guts healing ❤️
    • Wends
      Inconclusive results

      By Wends · Posted

      Lol that’s so true! Hope you get clarity, it’s tough when there’s doubt. There’s so much known about celiac disease with all the scientific research that’s been done so far yet practically and clinically there’s also so much unknown, still. Out of curiosity what’s her dairy consumption like? Even compared to early years to now? Has that changed? Calcium is dependent in the mechanism of antigen presenting cells in the gut. High calcium foods with gluten grains can initiate inflammation greater.  This is why breakfast cereals and milk combo long term can be a ticking time bomb for genetically susceptible celiacs (not a scientific statement by any means but my current personal opinion based on reasoning at present). Milk and wheat are the top culprits for food sensitivity. Especially in childhood. There are also patient cases of antibodies normalising in celiac children who had milk protein intolerance/ delayed type allergy. Some asymptomatic. There were a couple of cases of suspected celiacs that turned out to have milk protein intolerance that normalised antibodies on a gluten containing diet. Then there were others that only normalised antibodies once gluten and milk was eliminated. Milk kept the antibodies positive. Celiac disease is complicated to say the least.
    • deanna1ynne
      Inconclusive results

      By deanna1ynne · Posted

      And thank you for your encouragement. I am glad that her body is doing a good job fighting it. I also just want clarity for her moving forwards. She was only 6 for the last round of testing and she's 10 now, so I'm also hoping that makes a difference. It was weird during her last round of testing though, because right before her biopsy, we'd upped her gluten intake by giving her biscuits made from straight up vital wheat gluten, and her labs actually normalized slightly (lower ttg and her ema went negative). Bodies just do weird things sometimes! lol
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