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Celiac Because Of Symptoms, And Blood Test

mjhere69

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mjhere69 Rookie
mjhere69
Posted

4 years ago, the dr. diagnosed me with celiac. I had lost 47 lbs, was "couch bound" from weakness from diah. Over the past 3 years, I have been diagnosed with..gastroparesis ( have been on a yogurt and ensure diet for a year and a half, because. Then diagnosed with microscopic colitis ( Dr. took biopsys during colonoscopy) It is immflamation and swelling INSIDE your colon, causing water diah. and cramping. A few months ago, after a stool sample, was diagnosed with C diff. It took 3 rounds of antibiotics to get over that. I was so weak I could not function. I got an IV, which gave mes some energy back. I am gluten free because of my diet, lactose intolerant, so I take lactaid pills. Doctors arnt listening. Do all of these things have something in common? Is there anything I can take to get my strength back up, even a little? My gastroenterologist doesnt think I have celiac, but he tested me after I had been gluten free for 2 years. I do not know what to do to get my life back. I did better, when I was eating reg food and was gluten free. Can anyone help..Mary

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ShayFL Enthusiast
ShayFL
Posted

Hi Mary,

Sorry to hear you are having so many issues right now. The gastro is a tough one. Basically your nerves arent working right. Have they tested you for B-12 deficiency???

Yes or no, you should go and buy a good sublingual methylcobalmin. Jarrow is good. It goes under your tongue so you do not even have to digest it. Use the 5000. Perfectly safe as anything your body doesnt need will get moved through to your urine.

I would also encourage you to try acupuncture as it is very good for nerve issues and organs that arent working right (i.e. your stomach). Acupressure is also good. You can buy a book on acupressure and do it on yourself.

You might also look into Seacure or Immunical which are both pre-digested proteins supplements that help rebuild your intestines. Seacure is fish based and Immunical is whey based (should be lactose free).

And as whacky as this might sound....you should "talk to your gut". Relax and give it a nice massage. Perhaps put a warm hot pad on it. Tell it how much you love it and you want it to get better. Ask it questions. See if any revelations surface. Believe it or not, our bodies "talk to us". Yours needs some attention. Please try very hard not to be "angry" at your body. It is doing the best it can. I was amazed at how my emotional life and my body changed when I started to learn to love and care for myself. When I had a pain instead of saying "stupid body", I would catch myself and say "I know you have this pain for a reason. I love you for trying to tell me something. I will do everything I can to heal you. I love you my beautiful body". At first it made me cry to say these things because I had spent so many years hating my body. But now I have the greatest love and respect for my body. Every inch of it, scars, warts and all......

A good book that REALLY changed me is by Louise Hay called "You Can Heal Your Life".

Wishing you well.

Shay

mjhere69 Rookie
mjhere69
Posted
  • Author
Hi Mary,

Sorry to hear you are having so many issues right now. The gastro is a tough one. Basically your nerves arent working right. Have they tested you for B-12 deficiency???

Yes or no, you should go and buy a good sublingual methylcobalmin. Jarrow is good. It goes under your tongue so you do not even have to digest it. Use the 5000. Perfectly safe as anything your body doesnt need will get moved through to your urine.

I would also encourage you to try acupuncture as it is very good for nerve issues and organs that arent working right (i.e. your stomach). Acupressure is also good. You can buy a book on acupressure and do it on yourself.

You might also look into Seacure or Immunical which are both pre-digested proteins supplements that help rebuild your intestines. Seacure is fish based and Immunical is whey based (should be lactose free).

And as whacky as this might sound....you should "talk to your gut". Relax and give it a nice massage. Perhaps put a warm hot pad on it. Tell it how much you love it and you want it to get better. Ask it questions. See if any revelations surface. Believe it or not, our bodies "talk to us". Yours needs some attention. Please try very hard not to be "angry" at your body. It is doing the best it can. I was amazed at how my emotional life and my body changed when I started to learn to love and care for myself. When I had a pain instead of saying "stupid body", I would catch myself and say "I know you have this pain for a reason. I love you for trying to tell me something. I will do everything I can to heal you. I love you my beautiful body". At first it made me cry to say these things because I had spent so many years hating my body. But now I have the greatest love and respect for my body. Every inch of it, scars, warts and all......

A good book that REALLY changed me is by Louise Hay called "You Can Heal Your Life".

Wishing you well.

Shay

mjhere69 Rookie
mjhere69
Posted
  • Author

Shay, I appreciate you taking time to respond to me. It is very uplifting just to know someone knows what you are going through. Your advice is encouraging and I will definatly be checking up on it. Thank you so much. Mary :rolleyes:

oceangirl Collaborator
oceangirl
Posted

Hi Mary,

When you say your doctor diagnosed you with celiac, did you go gluten-free? If so, has it not helped? I'm so sorry you are having so much difficulty. In your title you say you had positive bloodwork? I do think you must try strict adherence to gluten-free living if this is the case. And I concur that acupuncture is a tremendous avenue for healing. But first, I am curious what measures you've taken regarding the possibility that you are gluten-intolerant or have celiac.

Healing thoughts for you,

lisa

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    • trents
      Eating gluten before blood test

      By trents · Posted

      Understood. And don't beat yourself up about this. Many are in the same boat as you, having experimented with the gluten-free diet before getting formerly tested. It is a logical, common sense approach when you don't have the knowledge about how testing works or you don't have the healthcare resources to afford testing. And some experience such severe reactions to gluten that it is impossible to get through the gluten challenge in order to get tested. So, they must live with the ambiguity of not knowing for sure if they suffer from celiac disease or NCGS. But at the end of the day, the antidote is the same for both. Namely, life-ling abstinence from gluten. Recently there was an article on posted on this forum about the develop of a new testing method for diagnosing celiac disease that do not require a gluten challenge. It is still in the developmental stage and probably years away from becoming main streams even if it pans out. But there is hope at least.
    • Dema
      Eating gluten before blood test

      By Dema · Posted

      Ooh thanks for all the info I'll check them out, though I may not be functional after 6 slices for 6 weeks 😅
    • Dema
      Eating gluten before blood test

      By Dema · Posted

      alright thank your help! 🤍
    • Scott Adams
      Eating gluten before blood test

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      Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    
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      By Scott Adams · Posted

      Your experience is incredibly common and frustrating for many in the celiac and gluten-sensitive community, and it's especially challenging with the added layer of healthcare disparities for people of African descent. A negative endoscopy and blood panel, while the gold standard, are not infallible and can miss cases, particularly if you weren't consuming a significant amount of gluten leading up to the tests (the "gluten challenge"). Your dramatic improvement on a gluten-free diet is the most critical piece of evidence here—your body is giving you the answer the tests could not. The symptoms you're describing now, especially the dyshidrotic eczema and blister bumps, are huge red flags for a gluten-related disorder, and your GP dismissing the possibility of dermatitis herpetiformis without a biopsy is a significant oversight. Requesting a new dermatologist and specifically asking for a skin biopsy next to an active lesion (not on it) is the absolute best next step. In the meantime, documenting your symptoms with photos and a food/symptom diary will build a powerful case for yourself. While the financial burden of a gluten-free diet is very real, your health is the priority; perhaps focusing on naturally gluten-free whole foods like rice, beans, and vegetables, rather than expensive processed substitutes, could be a more sustainable path forward until you can get a definitive opinion.
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