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Fibro Or Celiacs


marys2012

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marys2012 Rookie

I was diagnosed with fibromyaglia in 2008. I was offically diagnosed with ibs in 2012; unoffically in 2008. I have been through a lot. This includes surgery, physical therapy, and many medications. Tomorrow I meet with my gastro doctor about a possible positive blood test result for celiacs. Has anybody else besides me been through heck and back? I'm so scared I will get a negative biopsy (assuming my doctor is willing to continue with to a biopsy based on my blood test results). What have you guys been through? Was it hard? I don't have chronic diarreah like a lot of ceilacs but have a lot of other symptoms. The test I tested positive for on my bloodwork was a Deamidated Gliadin Abs, IgA (it was 76-above 30 was considered high). Just wanted to get some input. I am only 34. My problems started was I was around 27. I was the kind of person other people though had a good future ahead of them. It hasn't turned out that way.


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Yup Apprentice

Hi there!

I hope you find the answers you're looking for. I'm seeing one of the top Fibro docs in my city. She gets her patients off gluten and dairy. 90% are lactose intolerant. She also has them cooking with cast iron and using all natural fragrance free products in their homes.My quality of life has greatly improved.

mushroom Proficient

You still have a good future ahead of you, now that you are heading down the right path. That IBS path, as you have found out, doesn't lead anywhere, and it is a garbage diagnosis :blink: and just means that your doctor has not found out what is really wrong with you, in my book. Your deamidated gliadin blood test was strongly positive for celiac disease and this sounds like the most likely cause of your problems. Many people with diagnosed fibromyalgia and other problems even have their symptoms improve/clear up on a gluten free diet and are often able to ditch many of their medications. :)

Good luck on your appointment with the gastroenterologist. He will probably want to do an endoscopy with biopsies to confirm the celiac diagnosis. The good news is that even if that test turns out to be negative (maybe not yet enough damage to show up), going on the gluten free diet may well get rid of all your symptoms, so as soon as you have had the endo do give the gluten free diet a good three month trial.

marys2012 Rookie

I will do whatever it takes. If you knew me, I hope you would see someone with potential. I can't give up! Thanks for the support. I really need it now!

pricklypear1971 Community Regular

I will do whatever it takes. If you knew me, I hope you would see someone with potential. I can't give up! Thanks for the support. I really need it now!

I prefer to think of myself as a late re-bloomer :).

Cara in Boston Enthusiast

I went through 5 years of seeing various doctors and none could figure out my strange symptoms. I had classic IBS symptoms, but also dizzy spells, numbness in my hands and feet, and heart palpitations (so I was seeing three different types of doctors and they were not communicating with each other.) When my son was diagnosed with Celiac and I started reading about it, I realized all my symptoms could be explained by this one thing . . . (and I am not a crazy hypochondriac as my doctor was now suspecting!). My blood test was positive, but my endoscopy was negative.

Since my son was gluten free, I started the diet too and ALL MY SYMPTOMS WENT AWAY. Along with ones I didn't even know I had (headaches, seasonal allergies, hair loss, sleep issues, no more meds for GERD, etc.) I just thought I was getting old and worn out.

Strangely, now when I accidently have gluten, I get joint pain and all over body aches - something I never had before.

Your blood test is positive. If your scope is negative, it is probably because you do not have enough damage yet, or they tested the wrong spots. As soon as you are done, go gluten free and get ready to feel better. The positive blood test is GOOD NEWS.

I felt better in two weeks and MUCH better after three months . . .

Cara

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    • trents
      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.
    • Scott Adams
      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that you carry HLA-DQ2.2 means celiac disease is absolutely possible, even if it’s less common than DQ2.5, and many people with DQ2.2 present later and are under-diagnosed. Your hesitation to reintroduce gluten is completely understandable — quality of life matters — and many people in your position choose to remain strictly gluten-free and treat it as medically necessary even without formal biopsy confirmation. If and when you’re ready, a physician can help you weigh options like limited gluten challenge, serology history, or documentation as “probable celiac.” What’s clear is that this wasn’t just random IBS — you identified the trigger, and your body has been very consistent in its response.
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      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid multivitamin with essential nutrients in a readily absorbable form. MaryRuth's Morning Multivitamin w/ Hair Growth – Adds beauty-supporting ingredients (biotin, B vitamins), also gluten-free and easy to take. New Chapter Liquid Multivitamin and New Chapter Liquid Multivitamin Orange Mango – Fermented liquid form with extra nutrients and good tolerability if you prefer a whole-food-based formula. Nature's Plus Source Of Life Gold Liquid – Premium option with a broad spectrum of vitamins and plant-based nutrients. Floradix Epresat Adult Liquid Multivitamin – Highly rated gluten-free German-made liquid, good choice if taste and natural ingredients matter. NOW Foods Liquid Multi Tropical Orange – Budget-friendly liquid multivitamin with solid nutrient coverage.
    • catnapt
      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
      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
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