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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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    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      I might suggest you consider buckwheat groats. https://www.amazon.com/Anthonys-Organic-Hulled-Buckwheat-Groats/dp/B0D15QDVW7/ref=sr_1_4_pp?crid=GOFG11A8ZUMU&dib=eyJ2IjoiMSJ9.bk-hCrXgLpHqKS8QJnfKJLKbKzm2BS9tIFv3P9HjJ5swL1-02C3V819UZ845_kAwnxTUM8Qa69hKl0DfHAucO827k_rh7ZclIOPtAA9KjvEEYtaeUV06FJQyCoi5dwcfXRt8dx3cJ6ctEn2VIPaaFd0nOye2TkASgSRtdtKgvXEEXknFVYURBjXen1Nc7EtAlJyJbU8EhB89ElCGFPRavEQkTFHv9V2Zh1EMAPRno7UajBpLCQ-1JfC5jKUyzfgsf7jN5L6yfZSgjhnwEbg6KKwWrKeghga8W_CAhEEw9N0.eDBrhYWsjgEFud6ZE03iun0-AEaGfNS1q4ILLjZz7Fs&dib_tag=se&keywords=buckwheat%2Bgroats&qid=1769980587&s=grocery&sprefix=buchwheat%2Bgroats%2Cgrocery%2C249&sr=1-4&th=1 Takes about 10 minutes to cook. Incidentally, I don't like quinoa either. Reminds me and smells to me like wet grass seed. When its not washed before cooking it makes me ill because of saponins in the seed coat. Yes, it can be difficult to get much dietary calcium without dairy. But in many cases, it's not the amount of calcium in the diet that is the problem but the poor uptake of it. And too much calcium supplementation can interfere with the absorption of vitamins and minerals in general because it raises gut pH.
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    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      IBS-D vs Celiac

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