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Refractory Sprue

hafadai43

By hafadai43
in Coping with Celiac Disease

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hafadai43 Apprentice
hafadai43
Posted

I have been gluten free for four and a half years. I have been careful! My symptoms (mostly bloating that NEVER goes away and irregular bm's, almost constant fatigue and feelings of weakness) have not been relieved. Needless to say it's really frustrating me. I have been getting test after test and procedure after procedure done searching for answers. I have been tested for deficiencies and malnutrition and now I'm on TONS of iron each day among all the other vitamins I already took daily without fail. I have had an ultrasound done to look for tumors or cysts--they only found a very small uterine fibroid, nothing to worry about. I've had my bone density checked, I got tested for gluten contamination--negative, I had a colonoscopy (I am only 22) and they found not much of anything, nothing to explain my symptoms. I'm going to suggest to my doctor, for the second time, that I have allergen testing. I tried to do a food diary for over a month and could find no real pattern or specific food that caused my symptoms. I tried cutting out dairy, then soy....not much of a difference. I have had so many blood tests it's ridiculous...no answers!

My real question is....could it possibly be refractory sprue? I know it's rare and I could be way off....but has anyone else been diagnosed with it? If so...how did you feel? What were your symptoms? I am in need of some real direction and I have been doing research like crazy trying to find some answers of my own to bring with me to the Dr. when I go back on the 12th.... Can anyone help me?

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psawyer Proficient
psawyer
Posted

The member here known as "Canadian Karen" has been diagnosed with refractory sprue.

Open Original Shared Link

If you send her a message I am sure she will reply to it

hafadai43 Apprentice
hafadai43
Posted
  • Author

Thank you so much! I will contact her :)

moonmaiden Newbie
moonmaiden
Posted

See if they will try you on Nystatin for intestinal yeast. It treats the intestines only and doesn't put any strain on the liver. You'll know if you've got intestinal candidiasis because your symptoms will get worse for a few days and then much much better. If the bloating is due to a slow moving gut, you can bet that the yeast (as well as other organisms) will take advantage of that environment. You can also try herbal anti-fungals - there are tons of them out there.

marciab Enthusiast
marciab
Posted

I'd add probiotics to your diet and do whatever is necessary to get your BMs normal / daily. More than likely more raw fruits and veggies, fiber, coffee, some whole healthy fats (not supplements) like EVOO, grapeseed oil or Fish oil would help.

You may have to use a laxative in the beginning to get things moving, but don't depend on them. Eventually you'll learn what foods help you stay regular.

Marcia

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      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
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      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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