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Npealer

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Npealer Rookie

Hi All,

I hope someone can point me in the right direction or has had some similar symptoms. I was diagnosed with Celiac Disease in Feb 2011 and I have been on a gluten-free diet ever since. I am still having problems and I am not really sure if they are all related to my celiac disease or maybe something more. In the past 6 months I have had to consistently deal with Insomnia, headaches, dry skin, hair loss, muscle aches, occasional numbness in my fingers, shortness of breath and slight weight gain (5lbs) <-- I know not much but still, dry eyes, and wierdly enough it seems like my skin is thinning. I feel like the smallest thing will leave me scratch that takes forever to heal (like an older person). I'm only 33 yo and I am tired of feeling like crap even afer be gluten-free. Anybody go thru something similar? I have an email out to my doc to see about all these symptoms I have been experiencing. She diagnosed my celiac disease relatively quickly so I can only hope she will continue to be agressive in treating me. Thanks in advance


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GlutenDude Newbie

I know this is the last thing you want to hear...but you have to be patient. It took me a few years to start feeling better and five years later, still struggle. And I am as careful as they come. I would get another endoscopy and see if your intestines have healed at all.

Good luck and keep us posted.

Gluten Dude

missmellie Newbie

Hi! Has your thyroid been tested? Having a problem with thyroid is pretty common with celiac and several of your symptoms could be related to underactive thyroid. I have to agree with Gluten Dude about being patient. We all WANT to heal quickly, but our bodies don't always do what we want, do they? Also, it's possible that your gluten sensitivity has caused other problems to arise. Over time, untreated gluten sensitivity can make someone become intolerant to dairy and soy and other things as well. At least, that's what my doctor told me and it's certainly true in my case.

AVR1962 Collaborator

It is a good idea to have the thyroid checked and if that is not the problem look at supplements. Your body might not be getting all the nutrients it needs to feel better. Insomnia is a real good indicator that your body needs something more. Due to the hair issues, again do get the thyroid checked because hair loss in one symtom, you could benefit from BioSil drops, zinc and/or Primrose oil. Healing issues- take a look at zinc and look up vit K to see if that fits you. Numbness in the fingers, if not thyroid, could be B12. Fatigue could be iron, d or magnesium or all 3. Muscle aches, depends on whaty you are dealing with.....spasms- magnesium and potassium; hard muscles like you ahve just ran- Omega 3,6,9. All of these vits are common for Celiacs to have trouble with.

dilettantesteph Collaborator

I am a super sensitive celiac. I had to go on a whole foods diet to eliminate all symptoms.

Skylark Collaborator

I vote for thyroid too. Dry skin, hair loss, muscle aches, weight gain, and slow healing are classic hypothyroid symptoms.

Ask your doc if she'll test TSH and make sure she knows the modern reference range is 0.5-2.5. Some labs still don't flag TSH over 2.5 as abnormal.

Npealer Rookie

Thanks everyone for your responses. I went in to see my doc today and she is retesting my thryroid (had it done in Feb 2011 with normal results) She is also testing for other vitamin difiencies. I have always been borderline anemic my whole life so I am sure that may have something to do with it. Now it is a wait and see. I ended up walking out of my pharmacy $80 poorer this morning LOL


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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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