Do I have celiac?

[waiting4jonsnow]

Hello.  I've struggled with vitamin D and B deficiencies.   I also had a genetic test thru 23 and me that said I had one gene for celiac.  So i asked my doctor for a blood test.   Ot came back normal except for IGg.  This was HIGH at 9.7 on the scale below and said positive.  My doc hasn't said anything yet.  Do I have celiac?  Thanks in advance. 

 

Transglut IgG autab

Normal range: 0.0 - 5.9 u/mL

[trents]

DGP-IGG is a secondary test for celiac and not as reliable as the tTG-IGA, EMA or the DGP-IGA which are first tier tests. However, it certainly can indicate celiac disease, and is a valuable test for those with low total IGA, something that can skew other celiac antibody tests down toward the negative range.

Besides the low B and D levels, you have physical symptoms that would suggest celiac disease?

[waiting4jonsnow]

I have struggled with abdominal tenderness my whole life.  I also go back and forth between horrible constipation and loose stools. My mother has eosinophilic esophagitis which I believe is autoimmune.  Just seems like something auto is going on. 

And epic bloating.  Can't forget that! 

[trents]

Another possibility is NCGS (Non Celiac Gluten Sensitivity) which some experts believe can be a precursor to celiac disease and is 10x mor common. There is no real test for NCGS yet. Celiac disease must first be ruled out and the two share many of the same symptoms. Whatever you do, don't cut back on gluten until all testing is complete or you will invalidate the testing.

[waiting4jonsnow]

And epic bloating.  Can't forget that!  

 

thanks Trents.  I assume by further testing you mean a biopsy?  Is this something my doctor will order based on the positive IGG?

[trents]

1 hour ago, waiting4jonsnow said:

And epic bloating.  Can't forget that!  

 

thanks Trents.  I assume by further testing you mean a biopsy?  Is this something my doctor will order based on the positive IGG?

Yes, biopsy,  unless the original blood antibody tests were suspect due to low gluten consumption, in which case a "gluten challenge" would be in order with repeat blood antibody testing.

Edited April 2 by trents

[knitty kitty]

@waiting4jonsnow,

It's more likely Celiac Disease.  People with Non Celiac Gluten Sensitivity do not have genes for Celiac Disease.  

Thiamine B12 deficiency, anemia and Diabetes can affect antibody production causing false negatives.  Some Celiacs are seronegative.

Were you eating sufficient gluten in your diet prior to antibody testing?  Some people cut back on gluten prior to testing not realizing that their antibody levels drop if they do cut back on gluten which gives equivocal results.  You may want to do a repeat gluten challenge, eating sufficient gluten to get a strong antibody response.

According to recent research, updates to the gluten challenge are being implemented.

Recommended intake of gluten should be increased to 10 grams of gluten per day for at least two weeks. Or longer.

While three grams of gluten will begin the immune response, ten grams of gluten is needed to get antibody levels up to where they can be measured in antibody tests and changes can be seen in the small intestine.  

Keep in mind that there are different amounts of gluten in different kinds of bread and gluten containing foods.  Pizza crust and breads that are thick and chewy contain more gluten than things like cake and cookies.  

References:

https://www.beyondceliac.org/celiac-disease/the-gluten-challenge/

And...

Evaluating Responses to Gluten Challenge: A Randomized, Double-Blind, 2-Dose Gluten Challenge Trial

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7878429/?report=reader

 "In our study, limited changes in Vh:celiac disease (villi height vs crypt depth - aka damage to the small intestine)  following 14-day challenge with 3 g of gluten were observed, in accordance with Sarna et al.  While the 3 g dose was sufficient to initiate an immune response, as detected by several biomarkers such as IL-2, the 10 g dose was required for enteropathy within the study time frame. Based on our data, we would suggest that gluten challenge should be conducted over longer durations and/or using doses of gluten of ≥ 3 g/day to ensure sufficient histological change can be induced."

 

Eosinophilic Esophagitis has been linked to a diet high in sugar and carbohydrates.  A high carbohydrate diet can result in Thiamine deficiency and SIBO (small intestinal bacterial overgrowth).  Thiamine helps keep intestinal bacteria in check.  Excessive carbs and sugar in the diet require additional Thiamine in order to turn these into fuel for the body.  We can run short on Thiamine in just a few days.  Excessive carbs and sugar can pass undigested into the intestines where bacteria feed on them and release gas as a byproduct and causing bloating!  Thiamine deficiency can also cause diarrhea and constipation both.

Are you taking any vitamins now?  What has been done about your B vitamin deficiencies?

Keep us posted on your progress!

 

[waiting4jonsnow]

Thanks Knitty Kitty!  I was not restricting gluten at all.  I was eating allllll the gluten.   

 

I am also T2D.  So not sure what that would do to antibodies.  

[waiting4jonsnow]

I do take a really expensive, liquid multivitamin in the last 6 months because my hair was falling out.  I also take sublingual liquid B and a liquid D.  I discovered that I do NOT absorb vitamins in pill or capsule form.  My D was like 29, they put me on  a 50000 unit pill a day, and it didn't go up at all. So I take liquids.  This has helped my B.  D is still in 20s.

[knitty kitty]

I'm Type Two Diabetes also.  Diabetics lose Thiamine quickly because the kidneys don't reabsorb it.  So, most diabetics are thiamine insufficient.  

Thiamine is needed for antibody production.  If there's not sufficient Thiamine, the tTg IgA antibody producing cells in the intestines cannot develop and cannot produce antibodies in mass quantities.  TTg IgG antibodies are made by different antibody producing cells in the blood which don't require as much Thiamine, so sometimes IgG antibodies are all that's produced.  

Benfotiamine, a form of Thiamine that gets into cells easily, has been shown to be beneficial in diabetes. 

Thiamine interacts with the seven other B vitamins, so a B Complex is essential as well.  Thiamine needs magnesium to function properly, so a magnesium supplement should also be taken.  Taking just one or two B vitamins won't do.  All eight essential B Complex vitamins need to be taken together.  B Complex vitamins are water soluble.  Any excess is easily excreted in urine.  When we have deficiencies, we need to take more than the recommended daily dose of vitamins.  We need to take a daily dose plus more to compensate for poor absorption and to restock the vitamin stores inside cells.  Keep in mind, the RDA is the MINIMUM amount needed to prevent disease, not the optimal amount.  It's important to correct deficiencies or insufficiencies as quickly as possible so no permanent damage will be caused.

Instead of one 50000 unit pill a day of Vitamin D, take several 10000 unit pills several times a day.  My Vitamin D level was in the single digits.  I ate Vitamin D supplements like m&m's, craved them.  Really weird, yes, but my body knew what it needed.  Once my level was up, the craving disappeared.  Vitamin D helps regulate the immune system and calms inflammation.  

I did the same with the B Complex vitamins.  I took smaller doses of B Complex vitamins several times a day, usually with meals.  

Look into a low histamine Paleo diet like the Autoimmune Protocol Diet (AIP diet) which has been shown to promote healing in the gastrointestinal tract.  It will also starve out those SIBO bacteria and get rid of the bloating.

Keep us posted on your progress!

[trents]

6 hours ago, knitty kitty said:

@waiting4jonsnow,

It's more likely Celiac Disease.  People with Non Celiac Gluten Sensitivity do not have genes for Celiac Disease.  

Thiamine B12 deficiency, anemia and Diabetes can affect antibody production causing false negatives.  Some Celiacs are seronegative.

Were you eating sufficient gluten in your diet prior to antibody testing?  Some people cut back on gluten prior to testing not realizing that their antibody levels drop if they do cut back on gluten which gives equivocal results.  You may want to do a repeat gluten challenge, eating sufficient gluten to get a strong antibody response.

According to recent research, updates to the gluten challenge are being implemented.

Recommended intake of gluten should be increased to 10 grams of gluten per day for at least two weeks. Or longer.

While three grams of gluten will begin the immune response, ten grams of gluten is needed to get antibody levels up to where they can be measured in antibody tests and changes can be seen in the small intestine.  

Keep in mind that there are different amounts of gluten in different kinds of bread and gluten containing foods.  Pizza crust and breads that are thick and chewy contain more gluten than things like cake and cookies.  

References:

https://www.beyondceliac.org/celiac-disease/the-gluten-challenge/

And...

Evaluating Responses to Gluten Challenge: A Randomized, Double-Blind, 2-Dose Gluten Challenge Trial

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7878429/?report=reader

 "In our study, limited changes in Vh:celiac disease (villi height vs crypt depth - aka damage to the small intestine)  following 14-day challenge with 3 g of gluten were observed, in accordance with Sarna et al.  While the 3 g dose was sufficient to initiate an immune response, as detected by several biomarkers such as IL-2, the 10 g dose was required for enteropathy within the study time frame. Based on our data, we would suggest that gluten challenge should be conducted over longer durations and/or using doses of gluten of ≥ 3 g/day to ensure sufficient histological change can be induced."

 

Eosinophilic Esophagitis has been linked to a diet high in sugar and carbohydrates.  A high carbohydrate diet can result in Thiamine deficiency and SIBO (small intestinal bacterial overgrowth).  Thiamine helps keep intestinal bacteria in check.  Excessive carbs and sugar in the diet require additional Thiamine in order to turn these into fuel for the body.  We can run short on Thiamine in just a few days.  Excessive carbs and sugar can pass undigested into the intestines where bacteria feed on them and release gas as a byproduct and causing bloating!  Thiamine deficiency can also cause diarrhea and constipation both.

Are you taking any vitamins now?  What has been done about your B vitamin deficiencies?

Keep us posted on your progress!

 

I'm not sure that it would necessarily be true that people with NCGS do not have celiac genes. After all, some experts believe that NCGS can be a precursor to celiac disease. What we can say is that converse is more or less true. That is, people who do not have celiac genes cannot develop celiac disease or at least are highly unlikely to from what we know at this point in time.

3 hours ago, waiting4jonsnow said:

I do take a really expensive, liquid multivitamin in the last 6 months because my hair was falling out.  I also take sublingual liquid B and a liquid D.  I discovered that I do NOT absorb vitamins in pill or capsule form.  My D was like 29, they put me on  a 50000 unit pill a day, and it didn't go up at all. So I take liquids.  This has helped my B.  D is still in 20s.

Make sure all the supplements you take are gluten free.

[OctiSD]

Hi - new to this group. I have been gluten-free for a decade now. Was told to start the diet after being dx with Hoshimotos. I started to feel better and my antibodies were cut in half after sticking to the diet. I always stuck to the gluten-free diet but never was celiac strict bc I just assumed I was sensitive. In the past 5 years I began bloating heavily, constipation and LS, stomach pain and I decided to have genetic testing since doing a biopsy wasn't possible unless I did a gluten challenge. I have one of the 2 genetic markers. I have since followed a strict celiac diet and do feel better. Digestion, bloating, and consumption is still a challenge but far less then before. I now tell people I'm celiac but find family and others often challenge me on the dx. Should I get more testing? Am I wrong to say I'm celiac at this time?

[trents]

53 minutes ago, OctiSD said:

Hi - new to this group. I have been gluten-free for a decade now. Was told to start the diet after being dx with Hoshimotos. I started to feel better and my antibodies were cut in half after sticking to the diet. I always stuck to the gluten-free diet but never was celiac strict bc I just assumed I was sensitive. In the past 5 years I began bloating heavily, constipation and LS, stomach pain and I decided to have genetic testing since doing a biopsy wasn't possible unless I did a gluten challenge. I have one of the 2 genetic markers. I have since followed a strict celiac diet and do feel better. Digestion, bloating, and consumption is still a challenge but far less then before. I now tell people I'm celiac but find family and others often challenge me on the dx. Should I get more testing? Am I wrong to say I'm celiac at this time?

Your conclusion seems reasonable to me but you might want to modify your declaration to say something like, "I'm reasonably certain I have celiac disease."

[knitty kitty]

Welcome to the forum, @OctiSD!

You may want to consider having an endoscopy with biopsies now without a gluten challenge.  That way you could get a baseline of what damage done due to Celiac is still left and needs healing.  It can also rule out any other digestive problems that can cause similar symptoms.  Checking anti gluten antibodies in the blood would also be a good idea.  

Hope this helps.

[OctiSD]

Hi - new to this group. I have been gluten-free for a decade now. Was told to start the diet after being dx with Hoshimotos. I started to feel better and my antibodies were cut in half after sticking to the diet. I always stuck to the gluten-free diet but never was celiac strict bc I just assumed I was sensitive. In the past 5 years I began bloating heavily, constipation and LS, stomach pain and I decided to have genetic testing since doing a biopsy wasn't possible unless I did a gluten challenge. I have one of the 2 genetic markers. I have since followed a strict celiac diet and do feel better. Digestion, bloating, and consumption is still a challenge but far less then before. I now tell people I'm celiac but find family and others often challenge me on the dx. Should I get more testing? Am I wrong to say I'm celiac at this time?

[OctiSD]

Thanks  for the feedback @knitty kitty and @trents. I have asked my GI doc multiple times about a biopsy and they decline to prescribe it saying its not worth it bc they feel all the indicators are there and I have been gluten-free for too long now. Do others have this issue with their GI's? Not sure if its an insurance thing or not. Wouldn't the antibody test require a gluten challenge too?

[trents]

It seems that you may still be getting "glutened" now and then since you still report having symptoms sometimes even though they are less frequent. But, yes, to ensure a reliable test result, either via blood antibody testing or biopsy, you would need to endure the gluten challenge which would require daily consumption of 4-6 slices of bread (or the gluen equivalent, i.e. 10 g. of gluten) for at least two weeks and preferably 3-4 weeks.