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

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

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
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

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

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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,956
    • Most Online (within 30 mins)
      7,748

    ramonaja
    Newest Member
    ramonaja
    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

    • Jacki Espo
      This happened to me as well. What’s weirder is that within a couple hours of taking paxlovid it subsided. I thought maybe I got glutened but after reading your post not so sure. 
    • Mari
      Hi Tiffany. Thank you for writing your dituation and  circumstancesin such detail and so well writte, too. I particularly noticed what you wrote about brain for and feeling like your brain is swelling and I know from my own experiences that's how it feel and your brain really does swell and you get migraines.    Way back when I was in my 20s I read a book by 2 MD allergist and they described their patient who came in complaining that her brain, inside her cranium, was swelling  and it happened when she smelled a certain chemical she used in her home. She kept coming back and insisting her brain actually swelled in her head. The Drs couldn't explain this problem so they, with her permission, performed an operation where they made a small opening through her cranium, exposed her to the chemical then watched as she brain did swell into the opening. The DRs were amazed but then were able to advise her to avoid chemicals that made her brain swell. I remember that because I occasionally had brain fog then but it was not a serious problem. I also realized that I was becoming more sensitive to chemicals I used in my work in medical laboratories. By my mid forties the brain fog and chemicals forced me to leave my  profession and move to a rural area with little pollution. I did not have migraines. I was told a little later that I had a more porous blood brain barrier than other people. Chemicals in the air would go up into my sinused and leak through the blood brain barrier into my brain. We have 2 arteries  in our neck that carry blood with the nutrients and oxygen into the brain. To remove the fluids and used blood from the brain there are only capillaries and no large veins to carry it away so all those fluids ooze out much more slowly than they came in and since the small capillaries can't take care of extra fluid it results in swelling in the face, especially around the eyes. My blood flow into my brain is different from most other people as I have an arterial ischema, adefectiveartery on one side.   I have to go forward about 20 or more years when I learned that I had glaucoma, an eye problem that causes blindness and more years until I learned I had celiac disease.  The eye Dr described my glaucoma as a very slow loss of vision that I wouldn't  notice until had noticeable loss of sight.  I could have my eye pressure checked regularly or it would be best to have the cataracts removed from both eyes. I kept putting off the surgery then just overnight lost most of the vision in my left eye. I thought at the I had been exposed to some chemical and found out a little later the person who livedbehind me was using some chemicals to build kayaks in a shed behind my house. I did not realize the signifance  of this until I started having appointments with a Dr. in a new building. New buildings give me brain fog, loss of balance and other problems I know about this time I experienced visual disturbances very similar to those experienced by people with migraines. I looked further online and read that people with glaucoma can suffer rapid loss of sight if they have silent migraines (no headache). The remedy for migraines is to identify and avoid the triggers. I already know most of my triggers - aromatic chemicals, some cleaning materials, gasoline and exhaust and mold toxins. I am very careful about using cleaning agents using mostly borax and baking powder. Anything that has any fragrance or smell I avoid. There is one brand of dishwashing detergent that I can use and several brands of  scouring powder. I hope you find some of this helpful and useful. I have not seen any evidence that Celiac Disease is involved with migraines or glaucoma. Please come back if you have questions or if what I wrote doesn't make senseto you. We sometimes haveto learn by experience and finding out why we have some problems. Take care.       The report did not mention migraines. 
    • Mari
      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but another, tissue transaminasewas normal. Itdid show I was  allergic to cows milk and I think hot peppers. I immediately went gluten free but did not go in for an endoscopy. I found an online lab online that would do the test to show if I had a main celiac gene (enterolab.com). The report came back that I had inherited a main celiac gene, DQ8, from one parent and a D!6 from the other parent. That combination is knows to sym[tons of celiac worse than just inheriting one main celiac gene. With my version of celiac disease I was mostly constipated but after going gluten-free I would have diarrhea the few times I was glutened either by cross contamination or eating some food containing gluten. I have stayed gluten-free for almost 20 years now and knew within a few days that it was right for me although my recovery has been slow.   When I go to see a  medical provide and tell them I have celiacs they don't believe me. The same when I tell them that I carry a main celiac gene, the DQ8. It is only when I tell them that I get diarrhea after eating gluten that they realize that I might have celiac disease. Then they will order th Vitamin B12 and D3 that I need to monitor as my B12 levels can go down very fast if I'm not taking enough of it. Medical providers haven't been much help in my recovery. They are not well trained in this problem. I really hope this helps ypu. Take care.      
    • knitty kitty
    • DebJ14
×
×
  • 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.