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

Celiac Because Of Symptoms, And Blood Test

mjhere69

Recommended Posts

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

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

Celiac.com Sponsor (A8-M):


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

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,142
    • Most Online (within 30 mins)
      7,748
    KP009
    Newest Member
    KP009
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Wheatwacked
      GI DX celiac despite neg serology and no biopsy

      By Wheatwacked · Posted

      Just a gluten free diet is not enough.  Now you have to identify and replenish your malnutrition.  Celiac disease is co-morbid with malabsorption syndrome.  Low vitamin D, Low Thiamine caused Gastointeston Beriberi, low choline, low iodine are common the general population, and in newly diagnosed Celiacs in the western culture its is more likely.  It takes time to heal and you need to focus on vitamins and minerals.  Gluten free foods are not fortified like regular processed foods.  
    • Sarah Grace
      Headaches / Migraines and Hypoglycaemia

      By Sarah Grace · Posted

      Dear Kitty Since March I have been following your recommendations regarding vitamins to assist with various issues that I have been experiencing.  To recap, I am aged 68 and was late diagnosed with Celiac about 12 years ago.  I had been experiencing terrible early morning headaches which I had self diagnosed as hypoglycaemia.  I also mentioned that I had issues with insomnia, vertigo and brain fog.   It's now one year since I started on the Benfotiamine 600 mg/day.  I am still experiencing the hypoglycaemia and it's not really possible to say for sure whether the Benfotiamine is helpful.  In March this year, I added B-Complex Thiamine Hydrochloride and Magnesium L-Threonate on a daily basis, and I am now confident to report that the insomnia and vertigo and brain fog have all improved!!  So, very many thanks for your very helpful advice. I am now less confident that the early morning headaches are caused by hypoglycaemia, as even foods with a zero a GI rating (cheese, nuts, etc) can cause really server headaches, which sometimes require migraine medication in order to get rid off.  If you are able to suggest any other treatment I would definitely give it a try, as these headaches are a terrible burden.  Doctors in the UK have very limited knowledge concerning dietary issues, and I do not know how to get reliable advice from them. Best regards,
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
      Finding gluten free ingredients

      By captaincrab55 · Posted

      Imemsm, Most of us have experienced discontinued, not currently available or products that suddenly become seasonal.   My biggest fear about relocating from Maryland to Florida 5 years ago, was being able to find gluten-free foods that fit my restricted diet.  I soon found out that the Win Dixie and Publix supper markets actually has 99% of their gluten-free foods tagged, next to the price.  The gluten-free tags opened up a  lot of foods that aren't actually marked gluten-free by the manufacture.  Now I only need to check for my other dietary restrictions.  Where my son lives in New Hartford, New York there's a Hannaford Supermarket that also has a gluten-free tag next to the price tag.  Hopefully you can locate a Supermarket within a reasonable travel distance that you can learn what foods to check out at a Supermarket close to you.  I have dermatitis herpetiformis too and I'm very sensitive to gluten and the three stores I named were very gluten-free friendly.  Good Luck 
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
×
×
  • 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.