Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Help Needed...

Isis

Recommended Posts

Isis Newbie
Isis
Posted

Hi:

At 18 y/old I had a very bad episode of intestinal problems and then it disappeared. I tried going gluten-free for a while and felt much better but since I didn't have a celiac disease diagnose I went back to eating everything that I liked.

Fast forward 10 years and I am now 28 y/old and a few months ago I decided I am going to do an Ironman (Triathlete 2.4 mile swim, 112 mile bike ride and 26.2 mile run in a maximum time of 12 hours) in March 2011. So I decided to look for a sports doctor to get me tested for everything she needed so we could make sure I was healthy for my IM race. Turns out she is a sports doctor but also specializes in family medicine. So we started doing a lot of tests, the first that came with an unexpected result was sugar in blood levels and it basically said that for some reason my body didn't recognize when I ate sugar and started producing too much insulin to compensate. Ok, nothing a well balanced nutrition couldn't help or so we thought. Second test comes (functional Intracellular analysis, it measures what actually gets into the cells and you can compare what is in your blood and what you are actually absorbing). It shows that unlike the regular blood tests said, My B-12, Folate, Calcium and all the B vitamins were very low. Again, she said ok we'll handle this and balance everything out. Until the bone density scan came back saying that I have Osteopenia just .01 away of osteoporosis. Yes, at 28 years old. NOT NORMAL at ALL. And it also said it was due to nutritional deficiencies.

Now I got her all my past medical history and she is convinced I have a malabsorption syndrome, possibly celiac disease. We decided to do a gluten-free diet (we didn't know about the fact that a gluten-free diet is not what you need to get tested!) . I started feeling better. I stopped being hungry all the time, I stopped having stomach issues, I started losing weight and I started having some energy...finally I could start training!!!

First she did a blood test ( I can't remember the name but it basically determines if there's a detectable reaction ( I had been gluten-free for more than a month). It came back normal. Then she decided to send me to a GE to have an endoscopy/biopsy. It was the holidays and the dr was on vacation, so by the time I finally got the procedure done I had already been gluten-free for almost three months and was feeling great. Biopsy came negative.

They still decided to keep me on a gluten-free diet until another blood test looking for antibodies came back and if it comes back negative they will start me on a little gluten and see how it goes. Not cool. Two days ago I went to an oriental restaurant with my sports doctor (who has become a very dear friend) and we decided to sit at the Tepanyaki table to be able to actually see what they were putting in my food. I ordered some rice and chicken and beef with veggies... they put soy sauce in everything. After I ate that I felt very bad. Cramps, very bloated, pain, and I felt very very tired and almost dizzy. Haven't felt like that in a long long time. It took two days for me to start feeling better. Right now I am looking at some other details and options as I am not interested in going for a Gluten challenge ( I am very worried about my nutrients being absorbed, I really need them. Specially I don't need my body to feel deprived and try to get whatever it needs and might remain in my poor bones!!!!!!!!)...

Taking a look at my family history my mom and brother were diagnosed with Thyroid disease this year, my dad was diagnosed with diabetes a year ago, my mom has a very old diagnosis of Irritable Bowel Syndrome (Misdiagnosed celiac I think). My sister has been having symptoms of multiple sclerosis and severe nutritional deficiencies. I have the feeling it can be Gluten ataxia, which mimics MS symptoms to such an extent that there is no way of telling if it is Gluten ataxia or MS. I took her to my dr and her blood tests came back with the same nutritional deficiencies I have but more severe. This week her bone density scan will arrive and I am guessing she will have osteoporosis. She was also ordered to go have an endoscopy with biopsy, suspecting celiac disease. The good part is she IS eating gluten right now. If her tests come back positive I guess that will help my doctor see if I might really have celiac disease even when everything comes back negative ? She cannot explain my almost osteoporosis! Anyway I am planning on getting gene testing to see how it goes, because if it comes back negative, then something else is VERY wrong and we need to know what it is and if it comes back positive I will just keep my gluten-free diet and repeat my nutritional and bone density tests. If they show improvement, I will definitely assume it is celiac and NOT go for a guten challenge.

Any advice?

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


tarnalberry Community Regular
tarnalberry
Posted

The gene test is NOT conclusive. But you have done (at least) two dietary tests that are strongly indicative of celiac. If nothing else, why would you continue eating gluten when you know it doesn't agree with you. (You may well want to pursue further testing, but it's hard to predict what will happen.) Those blood tests and biopsies you had were WORTHLESS. I encourage you to pretend the tests never happened.

Isis Newbie
Isis
Posted
  • Author

The gene test is NOT conclusive. But you have done (at least) two dietary tests that are strongly indicative of celiac. If nothing else, why would you continue eating gluten when you know it doesn't agree with you. (You may well want to pursue further testing, but it's hard to predict what will happen.) Those blood tests and biopsies you had were WORTHLESS. I encourage you to pretend the tests never happened.

Isis Newbie
Isis
Posted
  • Author

Thanks for taking your time to answer :) . I really wanted to be sure because a few reasons:

1. I am really scared of what is going on with my bones. If it is not celiac, what is happening in my body that is destroying my bones?

2. I feel great while not eating gluten so I have no intentions of eating it again. EVER. (obviously as ou know accidents happen and even things you think do not contain it might contain it or be cross contaminated). I am not eating out much bcause I fear what happened @ the chinese rest will happen again.

3. I am really worried about my family developing celiac related diseases. i am trying to get them tested, too.

But anyway, I will just keep my gluten-free diet and see what happens with my sister's tests...she is still eating gluten and I told her not to stop before she gets tested this week. Once again, Thanks ;)

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. knitty kitty
      - knitty kitty commented on Scott Adams's article in Multiple Sclerosis and Celiac Disease
      3

      Gluten-Free Diet Linked to Reduced Inflammation and Improved Outcomes in Multiple Sclerosis (+Video)

      I worried at one point on my journey whether I had MS, having many of the symptoms myself. However, my symptoms improved dramatically with high dose thiamine hydrochloride, Benfotiamine, and Thiamine TTFD. Thiamine deficiency symptoms overlap with MS symptoms, including changes on brain MRIs. Thiamine deficiency affected my eyes (light sensitivity),...
    2. trents
      - trents replied to Matthias's topic in Coping with Celiac Disease
      1

      Unexpected gluten exposure risk from cultivated mushrooms

      Welcome to the celiac.com communiuty, @Matthias! Yes, we have been aware that this can be an issue with mushrooms but as long as they are rinsed thoroughly it should not be a problem since the mushrooms don't actually incorporate the gluten into their cellular structure. For the same reason, one needs to be careful when buying aged cheeses and products...
    3. Matthias
      - Matthias posted a topic in Coping with Celiac Disease
      1

      Unexpected gluten exposure risk from cultivated mushrooms

      The one kind of food I had been buying and eating without any worry for hidden gluten were unprocessed veggies. Well, yesterday I discovered yet another pitfall: cultivated mushrooms. I tried some new ones, Shimeji to be precise (used in many asian soup and rice dishes). Later, at home, I was taking a closer look at the product: the mushrooms were growing...
    4. trents
      - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

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

      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_rh7ZclIOPtAA9KjvEEYtaeUV06FJQyCoi5dwcfXRt8dx3cJ6ctEn2VIPaaFd0nOye2TkASgSRtdtKgvXEEXknFVYURBjXen...
    5. Scott Adams
      - Scott Adams replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      IBS-D vs Celiac

      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 y...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,328
    • Most Online (within 30 mins)
      7,748
    VerafromNJ
    Newest Member
    VerafromNJ
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • trents
      Unexpected gluten exposure risk from cultivated mushrooms

      By trents · Posted

      Welcome to the celiac.com communiuty, @Matthias! Yes, we have been aware that this can be an issue with mushrooms but as long as they are rinsed thoroughly it should not be a problem since the mushrooms don't actually incorporate the gluten into their cellular structure. For the same reason, one needs to be careful when buying aged cheeses and products containing yeast because of the fact that they are sometimes cultured on gluten-containing substrate.
    • Matthias
      Unexpected gluten exposure risk from cultivated mushrooms

      By Matthias · Posted

      The one kind of food I had been buying and eating without any worry for hidden gluten were unprocessed veggies. Well, yesterday I discovered yet another pitfall: cultivated mushrooms. I tried some new ones, Shimeji to be precise (used in many asian soup and rice dishes). Later, at home, I was taking a closer look at the product: the mushrooms were growing from a visible layer of shredded cereals that had not been removed. After a quick web research I learned that these mushrooms are commonly cultivated on a cereal-based medium like wheat bran. I hope that info his helpful to someone.
    • 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.
    • Scott Adams
      IBS-D vs Celiac

      By Scott Adams · Posted

      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.
    • Scott Adams
      Question

      By Scott Adams · Posted

      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.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.