Jump to content
  • Sign Up
  • Join Our Community!

    Do you have questions about celiac disease or the gluten-free diet?

Woodrow

Blood Test Results Off The Charts

Rate this topic

Recommended Posts

Hi folks. I actually got diagnosed with Celiac 3.5 months ago, but just had my first follow up visit with my gastro today. He showed me the original blood results as follows:

Tissue Transglutaminase Antibody, IGA

Between 5-8 is normal.

My level was over 100 (off the charts - the highest the doctor has ever seen he said)

Gliadin Antibody, IGA

Between 11-17 is normal.

My level was 70.

Gliadin Antibody, IGC

Between 11-17 is normal.

My level was 64.

I have been 100% gluten free (to the best of my knowledge...we've been incredible anal about it). But I am still feeling absolutely horrendous. Stomach pains, DD, you name it.

I was wondering if anybody out there had numbers similar to mine and can share their healing experience with me. I'm running out of patience.

Many thanks.

Woodrow

Share this post


Link to post
Share on other sites

Try to eliminate dairy for a while while you heal. I am sure that it will make a difference to you.

Share this post


Link to post
Share on other sites

I second the dairy, but say, add soy to that. Those two often stop people from healing, even when on a 100% gluten-free diet.

Share this post


Link to post
Share on other sites

you've been not eating out or at friend's houses? changed out all suspicious cookware (colanders/strainers, wooden spoons/cutting boards, toasters)? checked all suspicious ingredients for gluten-containing non-wheat ingredients? checked all medications and vitamins?

(just checking)

Sometimes, if there's been a lot of damage, it can take a year (at least) for levels to go down. Are you feeling any better?

Share this post


Link to post
Share on other sites
you've been not eating out or at friend's houses? changed out all suspicious cookware (colanders/strainers, wooden spoons/cutting boards, toasters)? checked all suspicious ingredients for gluten-containing non-wheat ingredients? checked all medications and vitamins?

(just checking)

Sometimes, if there's been a lot of damage, it can take a year (at least) for levels to go down. Are you feeling any better?

Have gone by the book as far as due diligence of keeping gluten free. Felt better for a bit, but brutal this past month.

Share this post


Link to post
Share on other sites

I had numbers similar to yours. My doctor also called them off the charts.

Tissue transglutaminase IGA - 161 (normal 0 - 19)

Gliadin IGG AB - 117 (normal 0 - 19)

Gliadin IGA AB - 117 (normal 0 - 19)

I got a lot of immediate relief on the diet. No more vomiting, no more violent early morning pain, and a big decrease in the diarrhea. I had all over itching that took a month or 2 to subside.

I continued to have loose stools off and on and some mild abdominal discomfort for about 6 - 8 months. I found that I cannot eat very much grain of any type except corn. I have to really limit the gluten free breads, cakes and cookies, or I have symptoms similar to being glutened, just much milder. Teff flour affects me very much like gluten.

Most days I have just meats, fruits, veggies, potatoes and some rice. I can do corn tortillas, just not the other flours.

I turned a corner at about 8 months and really started feeling wonderful, but then started going up and down again. I have not fully stabilized yet. I rarely have overt diarrhea, unless I eat a packaged product or gluten free bread, etc, but I am really just now having what I consider normal formed stools.

Like you, I am very diligent and watch everything. I rarely eat out, and then only where I feel pretty safe.

I found I cannot eat most products that are produced in factories that produce wheat foods even though the item itself is gluten free.

Dairy makes no difference for me. I have not tried eliminating soy, but I really don't eat many things that might contain soy, as I cook almost everything from scratch.

My worse symptom now is the continuing overwhelming fatigue that has been pretty much unrelenting.

I am just a few weeks shy of the 1 year mark.

Did you have an EGD or colonoscopy? Maybe you have more going on besides the celiac. I was found to have markers for crohns and increased eosinophils.

Share this post


Link to post
Share on other sites

Many of us here found that we could not tolerate gluten-free breads, cakes, cookies, etc., until AFTER our guts had healed. THat meant not having ANY gluten-free breads, etc. for at least a few months!

Sounds cruel, but my own experience was that, even though my celiac symptoms were relatively mild, when I ate a piece of gluten-free bread, I felt like I'd swallowed a brick. I actually felt worse after eating gluten-free bread than regular bread!

That did change a few months into the diet.

If that still doesn't help, you might look into other food intolerances, and other causes, such as Lyme disease (you wouldn't believe how many here have it!), mercury toxicity, and somebody's posted a couple of threads about a syndrome that causes one to be unable to deal with protein!

Share this post


Link to post
Share on other sites

I forgot to mention that for about six months I was unable to eat any starches or grains at all. And I could not digest anything raw, including ordinary salad or fruit. So, for six months all my fruits or vegetables had to be well cooked, or I would have horrible stomach cramps and diarrhea within minutes, with everything coming back out undigested.

After six months I was able to tolerate some raw fruit (as in, maybe one a day), and a little bit of salad. I still have to limit raw fruit and vegetables after two years. I don't know how old you are, but I was undiagnosed for 52 years, and believe that I have some permanent damage that causes that.

Anyway, you may want to try just eating meat and well cooked vegetables and fruit for a while, and see if that makes any difference.

Share this post


Link to post
Share on other sites
Hi folks. I actually got diagnosed with Celiac 3.5 months ago, but just had my first follow up visit with my gastro today. He showed me the original blood results as follows:

Tissue Transglutaminase Antibody, IGA

Between 5-8 is normal.

My level was over 100 (off the charts - the highest the doctor has ever seen he said)

Gliadin Antibody, IGA

Between 11-17 is normal.

My level was 70.

Gliadin Antibody, IGC

Between 11-17 is normal.

My level was 64.

I have been 100% gluten free (to the best of my knowledge...we've been incredible anal about it). But I am still feeling absolutely horrendous. Stomach pains, DD, you name it.

I was wondering if anybody out there had numbers similar to mine and can share their healing experience with me. I'm running out of patience.

Many thanks.

Woodrow

Hi,

I was diagnosed Nov. 2006. My numbers were somewhat similar. tissue IgA- 162, IgA-165 and IgG-37. It took about 6 months for those levels to be down to normal. I was feeling better. But still after 15 months I still struggle a lot of days and get frustrated that I'll never be 100% (I keep going though). I tire so easily. Right now I'm down to a very basic diet again. That's when I feel the best. It's just hard because I'm a single Mom trying to take care of everything else too. But I know the diet works because after losing 30 lbs. before I was diagnosed I finally started gaining some of it back (only 8 so far).

So stay positive and don't get frustrated. You'll feel better again.

Diane

Share this post


Link to post
Share on other sites

Hi Woodrow,

All of my blood results were way off the charts too and my biopsy showed nasty degradation of intestinal vili. I've been off gluten since july and still have bad diarrhea, but I have more energy and less depression and less belly pain.

I also hope to get better some day , but I am never sure if I have ingested some gluten by accident, because I still have the runs all the time!

Most people on this forum seem to have lots of digestive problems other that "classic" celiac, like you and I do. At least we know what we have!!

Becky

Share this post


Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.


  • Top Posters +

  • Upcoming Events

    • March 24, 2019 Until March 27, 2019
      0  
      NEW ORLEANS GOURMET GLUTEN-FREE mini GETAWAY    March 24 ~ 27, 2019   We have arranged a fun and Gluten-free food filled mini in the city known for it's food and fun.  We have arranged to eat many of the famous dishes that aren't usually Gluten-free at a few of the World Renown restaurants.   Staying at the Royal Sonesta Hotel on Bourbon Street in the center of the French Quarter, you'll be able to enjoy the ambiance of the city at all hours.   Our itinerary will include a Luxury Coach tour of the city and surrounding area - Admission to The National World War II Museum, including the Tom Hanks" 4D film "Beyond All Boundaries" - an exciting Airboat ride and tour through the Bayou.      This it the 3rd time we have visited New Orleans and it has always been well attended, so join us even if you've been there before.  Check out our website for the complete itinerary and cost.    Due to contractual obligations we must have 20 participants by October 31, 2018 to make this a go.      If you have any questions just give us a call at 410-939-3218.  Bob & Ruth info@bobandruths.com (410) 939-3218
    • March 27, 2019 04:00 PM Until 08:00 AM
      0  
       
       
       
      Celiac Emotional Healing Support Group
       
       
       
      Again you are invited to join Johnny Patout, LCSW for Baton Rouge's first emotional healing support group meeting to assist those living with celiac disease manage the emotional challenges so many of us face. Most often the emotional disturbances include depression, disinterest in normal activities, insomnia, grief, mood changes, anxiety, inability to concentrate, extreme concern about managing a gluten-free lifestyle and other emotional and behavioral challenges.
       
      The professionals at Jamestown Avenue Counseling Center created the emotional healing support group to give us a safe place to begin to process our emotions and support each other as we heal emotionally while managing celiac disease and the resulting autoimmune disorders.
       
      The emotional healing support group meets every Thursday, 6:00-7:00pm, at the Jamestown Avenue Counseling Center of Baton Rouge. Jamestown Avenue Counseling Center is located at 4637 Jamestown Avenue, Baton Rouge, Suite B-1. Suite B-1 is upstairs.
       
      The support group is free and open everyone managing celiac disease. For more information: emotionalhealingforceliacs@hotmail.com
    • March 30, 2019 Until March 31, 2019
      0  
      Nourished Festival is a family-friendly event with 10 locations across the US. Attendees will be able to sample food, health and beauty products, meet with companies, learn about the most current food lifestyles, receive coupons and attend educational sessions with industry experts. 
      Nourished Festival, managed by The Nourished Group and presented by Enjoy Life Foods, is the largest gluten-free, allergy-friendly and specialty diet event in the US, with 10 locations including.
      ABOUT THE NOURISHED FESTIVALS
      Managed by The Nourished Group, formerly The Gluten Free Media Group, The Nourished Festivals are the largest and fastest growing special diet consumer events in the United States. Started in 2007, the events have expanded from one to ten cities throughout the country. The festivals cater to anyone looking to lead a healthier lifestyle or those who follow a specialty diet due to autoimmune conditions, food sensitivities, allergies or intolerances. Offerings including Paleo, Keto, Plant-Based, Gluten-Free, Allergen-Friendly and Nut-Free products. The events provide the opportunity for attendees to sample and purchase new products, receive coupons, meet with brand ambassadors and attend educational classes with industry experts. For more information, visit http://www.nourishedfestival.com 
       
  • Member Statistics

    • Total Members
      86,791
    • Most Online
      4,125

    Newest Member
    udayshankar
    Joined
  • Forum Statistics

    • Total Topics
      112,059
    • Total Posts
      956,643
  • Who's Online (See full list)

    There are no registered users currently online

  • Forum Discussions

    Hi, Thanks for your answer! Unfortunately I have to follow the MAOI diet for as long as I'm taking the MAOI, so essentially nobody's going to be inviting me round to dinner from now on… This is a bit of a shock. I don't really have any clear-cut symptoms that I would've considered worth going to the GP about. I mean I'm always tired and I have a bit of IBS and so on but generally I put that down to the other things wrong with me and the medication I have to take for them (mostly the bi
    Thanks Posterboy, that was interesting information.  I believe that I had read something elsewhere about tetracycline, at least, being used instead of, or along with, Dapsone for severe or refractory cases of DH. Unfortunately, even if I had medical insurance (which I do not), and had a regular doctor who was even willing to recognize and accept my condition for what it is, I don't know what kind of luck I would have in persuading that hypothetical doctor to give me a particular and non-sta
Healthysquirrel,  Please have your doctor check your Vitamin D level!   Vitamin D deficiency is related to vertigo https://www.ncbi.nlm.nih.gov/pubmed/27386060 Vitamin D can help with high IgE https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5263170/ Low vitamin D and low ferritin are tied https://www.ncbi.nlm.nih.gov/pubmed/29385099 Dry eye problems including blepharitis can be helped with vitamin d and vitamin a https://www.ncbi.nlm.nih.gov/pmc/articles
  • Blog Entries

  • ×
    ×
    • Create New...