Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

Hello - New Member Introduction

Deaminated Marcus

Recommended Posts

Deaminated Marcus Apprentice
Deaminated Marcus
Posted

Hello Forum Members,

 

I'd like to introduce myself... :)

 

I've been coming to the forum for about 2 months to learn about the tests.

I saw I wasn't the only one who was puzzled...thank you for all the information.

It is amazing how little doctors know in contrast to you all.

 

I don't know where to start but here it goes...  (sorry for the long intro)

 

As a kid I had the chronic D, I was underweight and sickly.

I had a colonoscopy at around 12 years old; the gastro-doctor found nothing.

In my 20's I controled the dreaded D by eating cheeze.

At 30 I was diagnosed with fibromyalgia.

 

In 2010 my fibromyalgia got really bad.

That year, I kept hearing on TV that the gluten free diet helped people with chronic pain and fatigue.

So in October 2010 I went gluten free.

Of course there was a learning curve of a few months.

 

After about 2 weeks of going gluten free my pain and fatigue vanished.

I was in hyper mode with insomnia, and I had so much energy that able to exercise and lose weight.

 

About a month after going gluten free, I went to see my doctor much thinner.

She didn't want me to get the Celiac blood tests but she told me to stay on the gluten free diet.

In retrospect this was the worse medical advice I received.

 

After seeing her,  I read 2 library books on Celiac and everything I read made sense from childhood D, having been underweight, dental enamel defects, and as an adult: broken foot bones, kidney stones, fatty liver, neurological problems, Lactose intolerance. :blink:

 

During my gluten free period of 2 years, my pain returned on and off and quite hard. At first I was was phoning companies to find out if they were putting gluten in their food but later I was eating only produce and cheeze, meat, eggs.

I got my carbs from rice and potatoes.

Then I noticed that beans and lentils gave me pain so that got me thinking.

 

The doctor that didn't want to test me for Celiac had moved and I found a better doctor by chance. Eventually the new doctor agreed to have me tested with a Celiac blood test or a food intolerance test.

But I procastinated another year as I was so afraid of even having even more pain if I returned to eating bread-gluten.

 

In December 2012 I did a tTG blood test - it was negative.

 

I did an IgG food intolerance panel in January 2013.

The IgG food intolerance test showed several foods that I was intolerant to such as Wheat (very high), Casein, Eggs, Peas and several others.

 

Months ago my doctor booked to see a gastroenterologist (which I'm seeing next week)  to check several issues as some auto immune problems are a reflection of what is happening in the gut.

While on the long waiting list, I continued to eat bread daily and with daily pain cranking up after January.

I stopped the eggs and the cheeze so the bread must be the cause of my pain.

 

I will need to see a Rheumatologist to re-evaluate my fibromyalgia as my PCP and an Internist suspects it developed into something worse but as others have said on this forum, I'd rather solve the problem by finding the food cause vs just taking pills.

 

I did the Celiac panel last week and got the disapointing results yesterday.

I'm listing the results below and I welcome some of your expert opinions...

Thank you for reading this far.

 

............................................................................................................................

 

Gluten challenge:

 

October 2010 to November 2012            gluten free

 

November 6 to December 6 - 2012         about 4 slices of bread / daily

December and January                          2 slices daily

February                                                2 to 6 slices daily

March                                                     4 to 6 slices daily

up to April 18                                         10 slices daily                   

 

(yes I gained weight)

 

.............................................................................................................................

 

December 6 - 2012

                                                            result            reference range

 

Total IgA :                                             0.92              0.69  - 3.82   g/L

 

Tissue Transglutaminase IgA AB             1                  < 4.0 ku/L     negative

                                                                                     4 to 10 kU/L weak pos.

                                                                                     > 10 ku/L      positive

 

.............................................................................................................................

 

January 2013                    IgG food intolerance test:

         

Wheat                               59      (Elevated when >30 U/ml)

 

................................................................................................................................

 

April 18 - 2013                  (done at a different lab than the first time)

 

 

                                                   result            reference range

 

Total IgA:                                     0.83              0.69  - 3.82 g/L      

 

Transglutaminase    IgA AB           2.2               < 10 U/mL

Deaminated Gliadin  IgA                0.6               < 10 U/mL

Deaminated Gliadin  IgG               2.5               < 10 U/mL

 

................................................................................................................................

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

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted

Looks like you were eating plenty of gluten for 5 months.  You may have non-Celiac gluten intolerance if you have a good result off gluten.  Unfortunately, there are no medical tests for it.

 

Open Original Shared Link

 

 

Open Original Shared Link

 

 

"Can I be screened for non-celiac gluten sensitivity?

There are no tests to diagnose non-celiac gluten sensitivity at this time. Which means, no research has been through a scientific, evidence-based, peer-reviewed study that proves what some labs claim as a way to detect non-celiac gluten sensitivity"

 

 

 

Open Original Shared Link

 

 

"Can the Elisa IgG food panel detect gluten sensitivity?

No, it can’t. In fact, it can’t detect any form of food allergy or intolerance."

1desperateladysaved Proficient
1desperateladysaved
Posted

I had good success with my Igg tests which I had recently.  I am eating only what tested negative too, and things I wasn't tested on.  For example,  I had never eaten and was never tested for lamb, so I took up eating that.  For 6 weeks, I am avoiding all food that I had a low level of  antibodies too.  After that I will add a food that I had a low level of intolerance to every four day and watch for any problems to appear.  There were foods I had more antibodies to and those I will be avoiding for longer, or never eating again.  Do you have such a plan for your food intolerance tests?

Deaminated Marcus Apprentice
Deaminated Marcus
Posted
  • Author

Thank you for that information Kareng.

I was worried I hadn't eaten enough gluten as I was gluten free for 2 years and I never cheated.

 

 

…………………………………………………………………………………

 

 

Hello 1desperateladysaved,

 

Yes I'm quite happy about doing the IgG food intolerance test too.

There were foods that I liked and dreaded might turn up like eggs and cheeze.

Those are good gluten free snacks like we don’t have enough restrictions.

Cheeze was a handy protein snack when I'd go out.

 

Before the test I ate a bigger variety of foods to know which foods I can eat when the ones I regularly ate would test positive.

 

One that tested positive that I would never have guessed in a million years were peas.
The test was right about Red Kidney beans which became a staple months after I went gluten free and in retrospect were causing me a lot of fibro aching.

However the test says Lentils and Peanuts are ok and like you, I will have to retest those as they were a big suspect in the past.

 

 

The pamphlet that came with the test results said to cut out the positive foods for at least 3 months.

I ended up cutting out the cheeze and the eggs (my favourites).

And what a difference cutting out the cheeze makes… I can breathe at night.

 

Since cutting out those 2 big ones the pain isn't the same.

I'm still on the gluten-wheat and it's more my shoulders and arms that hurt.

Lower back and hips are less often.

 

The yellow zoned foods that I cheated with are oranges and purple cabbage.

Foods that I tested negative for but suspect and didn’t test properly are peanuts.

 

Right now my big concern is diagnosing the Celiacs vs gluten sensitivity.

When I cut out the wheat and gluten completely, I will be able to reintroduce them one per month starting with the peanuts, then the lentils seperatly.

Then the yellow zoned foods. I might test the eggs that are in the red zone.

 

Apparently some of these positive foods, if you eat it once a week, it's ok, just not everyday.

So if you eat lamb every day every week, you can end up intolerant to lamb too.

 

Good luck at finding the right foods that work for you.

Archived

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

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


  • Member Statistics

    • Total Members
      130,202
    • Most Online (within 30 mins)
      7,748
    Molly G
    Newest Member
    Molly G
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • lizzie42
      Is tTG 9 normal after 4 months gluten-free?

      By lizzie42 · Posted

      It says normal is less than 5. 
    • RMJ
      Is tTG 9 normal after 4 months gluten-free?

      By RMJ · Posted

      The test result will never be shown as zero because the most negative the result can be reported as is less than the lowest amount the test can detect.  For example, you might see <2. What is the normal range for your daughter’s test?  Antibodies can hang around in the body for a while. Even if her result is not yet in the normal range, going from more than 100 to 9 in a few months is great! Good job, mom.
    • lizzie42
      Is tTG 9 normal after 4 months gluten-free?

      By lizzie42 · Posted

      My daughter has been gluten-free about 4 months. Prior, her tTG was over 100 (test maxed at 100). Her liver, iron, vit d are all normal again and she has grown 2 inches and gained 4.5 pounds in just 4 months! It's amazing. But her tTG is still at 9. Is that normal or should it be zero? Is she still getting gluten? We are SO strict. We don't eat out.  She was previously having tummy pain still. I cut oats completely 3 weeks ago and that is gone.  Can gluten-free oats raise tTG? Would I know based on symptoms? I was going to try her on oats again now that she doesn't say her tummy hurts anymore.  Also, our house is gluten free apart from one loaf of bread my husband uses. He makes sandwiches on a plate then puts it in the dishwasher. Yesterday when my celiac kids weren't home, my youngest and I ate "real" pasta. I was SO careful. All pans went in the dishwasher, I didn't spill any, I cleaned the sink I drained it in. Today my girl has her dermatitis herpetiformis rash back and had a huge hour long meltdown then fell asleep. Just like before diagnosis. Is it that hard to avoid cross contamination? Will one crumb off the plate or me cooking pasta when she's not home get her?  Again, we do not eat out, she's not in school yet, and she doesn't eat anything I don't give her. 
    • knitty kitty
      TTG IgA and IGA elevated mildy

      By knitty kitty · Posted

      Hi, @thejayland10, Do you still consume dairy?  Dairy can cause increased tTg IgA levels in some people with celiac disease who react to casein, the protein in dairy, just like to gluten.   You might try cutting out the processed gluten free foods.  Try a whole foods, no carbohydrate Paleo diet instead, like the AIP diet (the Autoimmune Protocol Diet by Dr. Sarah Ballantyne, a Celiac herself). Processed gluten free foods can be full of excess carbohydrates which can alter your microbiome leading to Small Intestinal Bacterial Overgrowth (SIBO).  SIBO is found in some people who are not responding to a gluten free diet.  SIBO can elevate tTg IgA levels.  The AIP diet cuts out sources of carbohydrates like rice, potatoes (nightshades), quinoa, peas, lentils, legumes, which starves out the SIBO bacteria.  Better bacteria can then proliferate.   I followed the AIP diet to get rid of my SIBO.  It's a strict diet, but my digestive tract had time to rest and heal.  I started feeling better within a few days.  Feeling improvement so soon made sticking to the AIP diet much easier. References: Small intestinal bacterial overgrowth among patients with celiac disease unresponsive to a gluten free diet https://pmc.ncbi.nlm.nih.gov/articles/PMC7759221/   Luminal antigliadin antibodies in small intestinal bacterial overgrowth https://pubmed.ncbi.nlm.nih.gov/9260801/#:~:text=Luminal total IgA concentrations (p,response to local bacterial antigens.   Potato glycoalkaloids adversely affect intestinal permeability and aggravate inflammatory bowel disease https://pubmed.ncbi.nlm.nih.gov/12479649/
    • trents
      New to gluten free living, in5ro and small question

      By trents · Posted

      First, welcome to the forum, @boy-wonder! Second, a little clarification in terminology is in order. Granted, inconsistency is rampant when it comes to the terminology associated with gluten disorders, but it has more or less become settled in this fashion: "Gluten intolerance" is a general term that car refer to either celiac disease or NCGS (Non Celiac Gluten Sensitivity). "Gluten Sensitivity" is the shortened version of NCGS. Third, Celiac disease is not an allergy to gluten. It is an autoimmune disorder characterized by gluten ingestion causing the immunes system to attack the lining of the small bowel, causing damage to it over time due to the constant inflammation that wears down the "villi" (mucosal finger-like projections that make up the lining). Over a significant period of time as gluten continues to be consumed, this generally results in impaired nutrient absorption. There are specific blood antibody tests available to check for celiac disease but the testing will not be valid while on a reduced gluten diet or a gluten free diet. Those already having having begun a gluten free diet must go back to consuming generous amounts of gluten for a period of weeks if they wish to pursue testing for celiac disease. Fourth, NCGS shares many of the same symptoms of celiac disease but does not damage the lining of the small bowel as does celiac disease. There is no test for it. A diagnosis for NCGS depends on first ruling out celiac disease. It is 10x more common than celiac disease. Some experts feel it can be a precursor to the development of celiac disease. Eliminating gluten from your life is the antidote for both. Fifth, you state that you are convince you don't have celiac disease by are just "gluten intolerant" (aka, gluten sensitive). How do you know that? It seems to me you are making a dangerous assumption here. I suggest you consider getting formally tested for celiac disease.
×
×
  • Create New...