New Guy Here...

[TerryinCO]

...so lotsa questions and unknowns for me. 

Gastro Doc did an endoscopy and found villi damaged so Celiac is suspect/known.  Subsequent blood work done and am awaiting evaluation from  NP or Doc.

I've started gluten free diet and that's going well.  I don't have any real symptoms but have lost ~ 10# over last year or so....180 down to 170 ( I'm about 6'0 and always been on the scrawny side).  I'm 76 and up to now have not  had Celiac/gluten issues, but do take hypothyroid meds, and diagnosed/treated for Barret's Esophigus.

I'm exploring the site here - looks like a lot of info available. 

Talk with you later.

Make yourself a great day!

Terry

 

 

[trents]

Welcome to the forum, @TerryinCO!

Do you know what blood tests were ordered? Was it for like you would have done for an annual physical (CBC/CMP) or celiac disease specific antibody tests?

I find it interesting that your GI doc did the endoscopy and biopsy before he/she ordered blood tests to check for celiac disease, assuming the blood tests ordered were indeed specific for celiac disease. Normally, the sequence is the other way around. Was the GI doc doing the endoscopy for some other reason in the first place? The endoscopy/biopsy is considered the gold standard for celiac diagnosis so I also find it interesting that the doc reflexively felt a need to order blood work as well. 

Just a heads up in case the bloodwork ordered was not specific for celiac antibodies: Going on a gluten-free diet before the blood draw for celiac antibody testing is done will likely invalidate the testing.

You probably know this already but hypothyroidism (Hashimoto's disease) is common in the celiac population and there is a statistical correlation. And then there is the weight loss. And I assume you have suffered with GERD for a long time and that is what led to the Barret's. All symptoms of celiac disease.

[knitty kitty]

Welcome to the forum, @TerryinCO,

Have you been checked for nutritional deficiencies?  Damage to the intestines like your doctor found affects the absorption of essential nutrients.  Supplementing with B Complex, Vitamin D, and minerals like magnesium help ensure you are absorbing vitamins your body needs to heal.  Weight loss is often seen in the malnutrition that accompanies Celiac Disease.  Weight loss, Barret's esophagus, and hypothyroidism are related to Thiamine Vitamin B1 insufficiency.  Talk to your doctor and nutritionist about supplementing with Thiamine in the form Benfotiamine and other vitamins and minerals.

Best wishes for your new journey with Celiac.  Keep us posted on your progress.

Edited January 15 by knitty kitty
Typo correction

[TerryinCO]

Thanks for the replies, Trents and Knitty Kitty.  

The endoscopy was a check on the Barret's esphagus status (every2-3 years).  So she wasn't really looking for Celiac conditions.  I was not on gluten free diet for the blood tests so no masking of results. The blood tests ordered afterward were (and results);  TTG (Anti-Tissue Transglutaminase) IgA Quantitative -  <4.0 (this is a 'weak positive' I beleive) ;  ENDOMYSIAL ANTIBODIES IGA  <1.10 ;  TISSUE TRANSGLUTAMINASE IGG AB <.82 ; and a CMP.

I have been taking a B12 sublingual vitamin.

I've been treated for hypothyroidism and GERDs for 20+ years.  Thyroid problems are genetic on my mother's side.

With both your experience, I'd appreciate your input.  Thank you.

Terry

[trents]

Thanks for the additional info, @TerryinCO. Can you give the reference ranges for the celiac antibody tests. The scores you posted are not of much value without reference range numbers since there are not industry standards for these tests as far as the the scales they use. What they are testing for is the same but how they concoct the tests is a little different from lab to lab. You will need to repost the original numbers as well as the reference ranges in a new post as you will not be able to edit the original post.

Also, unfortunately, it doesn't seem your doctor ordered a "total IGA" test to determine of you are IGA deficient. If there is IGA deficiency, test scores for individual IGA celiac antibody tests will be artificially low.

You mention that there are genetic tendencies on your mother's side for thyroid problems. Perhaps there is also an inherited tendency for celiac disease on that side as well. It's only in the last couple of decades has the medical community begun to understand that celiac disease has long fingers that extend far beyond gut symptoms.

[TerryinCO]

This is going to be a long post...   Thank you for your time/expertise reviewing this.

TTG (Anti-Tissue Transglutaminase) IgA Quantitative

Normal range: below <4.0 U/mL

Value   <4.0

A negative result indicates that celiac disease is unlikely. If suspicion for celiac disease is strong then supplemental testing may be warranted. Concentration Interpretation: <4.0 U/mL: Negative 4.0-10.0 U/mL: Weak Positive >10.0 U/mL: Positive

Endomysial IgA Titer
Normal value: <1:10

Value  <1:10

INTERPRETIVE INFORMATION: Endomysial Antibody, IgA Titer The endomysial antigen has been identified as the protein cross-linking enzyme known as tissue transglutaminase. Performed By: ARUP Laboratories 500 Chipeta Way Salt Lake City, UT 84108 Laboratory Director: Jonathan R. Genzen, MD, PhD CLIA Number: 46D0523979

Tissue Transglutaminase IgG Antibody

Normal range: 0.00 - 4.99 FLU

Value  <0.82

INTERPRETIVE INFORMATION: Tissue Transglutaminase Ab, IgG In individuals with low or deficient IgA, testing for tissue transglutaminase (tTG) and deamidated Gliadin (DGP) antibodies of the IgG isotype is performed. Positive tTG and/or DGP IgG antibody results indicate celiac disease; however, small intestinal biopsy is required to establish a diagnosis due to the lower accuracy of these markers, especially in patients without IgA deficiency. Performed By: ARUP Laboratories 500 Chipeta Way Salt Lake City, UT 84108 Laboratory Director: Jonathan R. Genzen, MD, PhD CLIA Number: 46D0523979

[trents]

There are other possible causes or damaged small bowel villi besides celiac disease.

Google this: Not All That Flattens Villi Is Celiac Disease: A Review of Enteropathies

There is also something known as seronegative celiac disease:

https://pmc.ncbi.nlm.nih.gov/articles/PMC4586545/

[knitty kitty]

@TerryinCO,

Are you taking a B Complex in addition to your B12?  B 12 needs the other B vitamins to function correctly.  Celiac disease and the damage to the intestines makes absorbing vitamins and minerals difficult.  Talk to your doctor and nutritionist about supplementing while you're healing.  

Are you on any medication for your Gerd?  Here is often caused by too little production of digestive juices.  Supplementing with a B Complex will help.  

[TerryinCO]

Thanks, Knitty Kitty. No, I'm just taking B12...also a vitamin D3.  For gerd - Pantoprozole.

Trents, thanks for the links. There's a lot to digest there (pun intended), I'll have to read those a few times to grasp.

[knitty kitty]

@TerryinCO,

Pantoprazole  is an acid suppressor, but Gerd is often caused by too little stomach acid, (hypochlorhydria), not too much.  PPIs like yours suppress stomach acid production further, causing nutritional deficiencies.  PPIs cause additional damage to the intestinal lining and can inhibit antibody production in the intestines resulting in low tTg test results.  

To correct hypochlorhydria, Niacin and Thiamine are needed.  Of course, all eight B vitamins are needed because they work in concert together, so a B Complex supplement is beneficial.  Talk to your doctor and nutritionist about getting off the PPI and supplementing with Niacin and the B vitamins.  Niacin, the form that flushes, and Benfotiamine, a form of thiamine that promotes intestinal healing, would be beneficial.  The B vitamins are water soluble.  If not needed, they are excreted easily in urine.  

Doctors are only required to take twenty hours of nutrition education out of seven years at medical schools funded by pharmaceutical companies.  So talk to a nutritionist, too.  

[trents]

I have concern as well about the long term use of any PPI. I understand it was given to you to address the GERD but PPIs were never intended to be long term solutions. Yet, docs prescribe them like candy and never monitor for the ongoing need. They just leave people on them indefinitely which has long term negative health consequences from raising gut PH such as osteoporosis and other nutrient deficiency related problems. Raising gut PH (lower acidity) inhibits digestion and the assimilation of nutrients. I was on a PPI for years and weaned myself off of it in about a year. It was not easy because you get rebound, typically, that is. I used TUMS as a bridge.

[TerryinCO]

Thank you both for the information. Very much appreciated.

I did have a Dexa scan (bone density check) this year and was normal there.

Knitty Kitty, could I drop the B12 and just do B complex?  And would the B complex supply adequate Niacin and Thiamine?

I can go a day or two w/o pantaprozole, so I could/should ration that out as I can.  Daily routine is to take it, so...

Thank you again - both for your time and knowledge. But, it's a bit like drinking from a fire hose for me.  Lots of information to take in for me.

PS New test result today.  If I read this result correctly, anti-gliadin IgA antibodies are not reacting to gluten.

Anti-Gliadin Antibodies IgA Quantitative

Normal range: below <15.0 U/mL

Value  <0.2

Deamidated Gliadin Peptide (DGP) IgA Ab Reference Range: Negative <15 U/ml Positive >=15 U/ml

[Celiacandme]

Terry, I was diagnosed with Celiac disease and Barrett's from the same scope back in 2013. Did your endoscopy biopsy result confirm celiac or are you still waiting for that result? 

[TerryinCO]

Still waiting.  The Barrett's I've had for 5-6 years. The possible/probable Celiac is new this year.  Not sure why that's popped up, but there it is.

[Rogol72]

10 hours ago, trents said:

I have concern as well about the long term use of any PPI. I understand it was given to you to address the GERD but PPIs were never intended to be long term solutions. Yet, docs prescribe them like candy and never monitor for the ongoing need. They just leave people on them indefinitely which has long term negative health consequences from raising gut PH such as osteoporosis and other nutrient deficiency related problems. Raising gut PH (lower acidity) inhibits digestion and the assimilation of nutrients. I was on a PPI for years and weaned myself off of it in about a year. It was not easy because you get rebound, typically, that is. I used TUMS as a bridge.

I agree. PPI use long term is concerning. I believe a combination of PPI use along with a history of antibiotics for colds and sore throats led me to develop CDiff and Ulcerative Colitis shortly after a minor knee op. Lowering inflammation and bloating through diet can significantly help getting off PPIs in my experience.

[TerryinCO]

I haven't been on the site for a while and I have some update info.  

Genetic tests show I have the Celiac markers and high risk for Celiacs's  (10X it shows).  Immoglobulin A and G are low - just below the 'green' range; immoglobulin M is in the 'green'.  Zinc, Iron, magnesium, ferritin, and b12 are all in the 'green' range.

I've been off the PPI for two weeks now and no real problems...minor heart burn and OTC antacids fix that.  So that's good to be off of that for good.

I switched to a b complex sub lingual vitamin.

I was surprised about the genetic results on Celiac markers. To my knowledge no one in my family had it or were diagnosed with it.  But they could have had and never been diagnosed.  And at 76 this has come up for me.

Gluten free diet is going well and I do feel better on it - nothing major in changes - just better.

I appreciate all the advice I've gotten on this site - lots of experience knowledge to draw on here. So thank you, all.

[trents]

Thanks for the update @TerryinCO!

Would you elaborate what you mean when you say your genetic tests show that you are "10x higher" for developing celiac disease? 10x higher than what? There are two main genes, HLA-DQ2 and HLA-DQ8, that have been identified as providing the potential for developing celiac disease. Since 40% of the population carries one or both of these genes but only 1% of the population actually develops celiac disease, the genetic test cannot be used to diagnose celiac disease, simply to establish the potential for developing it. Gene testing is usually done to rule out celiac disease vs. NCGS (Non Celiac Gluten Sensitivity). In other words, if gluten consumption is definitely causing someone problems but they don't have the genetic potential for developing celiac disease then the diagnosis would be NCGS.

We also know that having both DQ2 and DQ8 puts one at higher risk for developing celiac disease than having just one or the other. But I'm not sure I've ever seen it quantified as in "10x higher". Not sure what you mean by this.

[TerryinCO]

Here's the test result I was refering to.  I may not be understanding this correctly.

[trents]

So, I would assume it means that if the risk of developing celiac disease in the general population is 1%, people with the DQ2 gene have a 10% risk of developing celiac disease.

So, have you or your physician concluded that you have celiac disease?

[TerryinCO]

They've not made that call at this point. They say it looks more like Celiac's than common variable immune deficiency.  They say to get a positive diagnosis another endoscopy is needed after I've been on gluten-free diet awhile.  So, waiting for more input from Docs'.

[trents]

So, is their reasoning for doing another biopsy after you've been gluten free for awhile to get a comparison of before and after? In other words, there should be healing of the SB lining if you go gluten free for awhile if you have celiac disease?

[TerryinCO]

I beleive so.  Waiting for response from NP.

[Bernade]

New here as well lots of things learning I’ve discovered lots of foods have sneaky gluten so be mindful how is it going?? I have issues when I do cocktails 🍸 I don’t know if it is gluten free or not but get horrible side effects and so many others ooh well we are all learning how to cope with this….

[Scott Adams]

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