High DGP-A with normal IGA

[rei.b]

Hello, I am feeling frustrated. I have hEDS and lifelong digestive issues but my GI PA is very focused on my celiac panel and I just want to make sure that she should be focused on that because completely changing my diet seems to have worsened my symptoms.  Symptoms are constipation, diarrhea, and acid reflux with spicy foods and certain foods like tomatoes, bell peppers, and onions. I also don't have a gallbaldder as it was removed almost a year ago. This also exacerbated my symptoms.

I did have joint pain from hEDS but that was already treated with low dose naltrexone about 4 months prior to going completely gluten free.

Endoscopy was abnormal but inconclusive; basically showed some inflammation - which common with hEDS.

I don't have any vitamin deficiency.

 

Celiac Panel Results:

TTG-A

<0.5 U/ML

Reference Range: 0.5-14.9 U/ML

NEGATIVE: <15 POSITIVE: =>15

DGP-A

72.0 U/ML

Reference Range: 0.2-14.9 U/ML

NEGATIVE: <15 POSITIVE: =>15

TTG-G

<0.8 U/ML

Reference Range: 0.8-14.9 U/ML

NEGATIVE: <15 POSITIVE: =>15

DGP-G

24.0 U/ML

Reference Range: 0.4-14.9 U/ML

NEGATIVE: <15 POSITIVE: =>15

IgG-A-M Results:

IMMUNOGLOBULIN A, QN, SERUM

165 MG/DL

Reference Range: 87-352 MG/DL

IMMUNOGLOBULIN M, QN, SERUM

164 MG/DL

Reference Range: 26-217 MG/DL

 

What are your thoughts, internet? Are there any questions I should be asking the PA? Thanks!

[trents]

Your DGP-G is also high.

The thing to do now would be to trial the gluten-free diet for a few months to see if there is improvement in symptoms.

[Wheatwacked]

Talk to your 

2 hours ago, rei.b said:

I also don't have a gallbaldder as it was removed almost a year ago. This also exacerbated my symptoms.

Talk to your provider about testing for vitamin and mineral deficiency.  celiac disease causes malabsorption and eventually malnutrition.  Especially vitamin D.

Having the gallbladder removed seems to be a common step on the way to a Celiac Disease Diagnosis,  Gallbladder is a sympton of deficient Choline. Eggs and red meat are the primary source..Choline makes up a majority of the bile salts.  The bile gets thick, doesn't get enough into intestine to digest fats well.  Can eventually back up into gallbladder, cause gallstones.  Without bile, bowel movements can become hard.

Try to avoid all processed foods while you are healing, The gluten-free foods are not fortified with vitamins and use various ingredients to mimic fat that bothers many Celiacs.  Choose vegatables with low omega 6.  Optimum omega 6 to omega 3 ratio is less than 3:1.  Wheat flour is 22:1.  Grass fed milk is 1:1.   Commercial Dairies milk is 5:1.  They feed wheat, rye and barley Gluten as part of the food mix.

 

[rei.b]

As I said, I do not have any vitamin deficiency. I was already tested.

[rei.b]

2 hours ago, trents said:

Your DGP-G is also high.

The thing to do now would be to trial the gluten-free diet for a few months to see if there is improvement in symptoms.

So far 3 months in - worsening symptoms. I have had the worst constipation in my life and I am primarily eating naturally gluten-free foods like potatoes, eggs, salad with homemade dressing, corn tortillas, etc. I hate gluten-free bread and pasta so I don't eat it. Occasionally I eat gluten-free almond flour crackers.

37 minutes ago, Wheatwacked said:

Talk to your 

Talk to your provider about testing for vitamin and mineral deficiency.  celiac disease causes malabsorption and eventually malnutrition.  Especially vitamin D.

Having the gallbladder removed seems to be a common step on the way to a Celiac Disease Diagnosis,  Gallbladder is a sympton of deficient Choline. Eggs and red meat are the primary source..Choline makes up a majority of the bile salts.  The bile gets thick, doesn't get enough into intestine to digest fats well.  Can eventually back up into gallbladder, cause gallstones.  Without bile, bowel movements can become hard.

Try to avoid all processed foods while you are healing, The gluten-free foods are not fortified with vitamins and use various ingredients to mimic fat that bothers many Celiacs.  Choose vegatables with low omega 6.  Optimum omega 6 to omega 3 ratio is less than 3:1.  Wheat flour is 22:1.  Grass fed milk is 1:1.   Commercial Dairies milk is 5:1.  They feed wheat, rye and barley Gluten as part of the food mix.

 

As stated in the post, I don't have any vitamin deficiency. I was already tested.

[trents]

Then it does not seem to me that a gluten-related disorder is at the heart of your problems, unless that is, you have refractory celiac disease. But you did not answer my question about how long you had been eating gluten free before you had the blood antibody test for celiac disease done.

[rei.b]

11 hours ago, trents said:

Then it does not seem to me that a gluten-related disorder is at the heart of your problems, unless that is, you have refractory celiac disease. But you did not answer my question about how long you had been eating gluten free before you had the blood antibody test for celiac disease done.

I hadn't been eating gluten free before having the antibody test done. I started eating gluten free after having the test done because the gastro PA told me to eat gluten-free for 6 months. I'm now 3 months in.

[trents]

Sorry, I think I got you mixed up with another poster.

[knitty kitty]

Hello, @rei.b,

Ehlers Danlos syndrome and Celiac Disease can occur together in genetically predisposed individuals.  Losing ones gallbladder is common with celiac disease.

I'm glad Naltrexone is helping with your pain.  Naltrexone is known to suppress tTg IgA and tTg IgG production, so it's not surprising that only your DGP IgG and DGP IgA are high.  

Have you tried the Autoimmune Protocol diet designed by Dr. Sarah Ballantyne, a Celiac herself?  The AIP diet helps lower inflammation and promotes intestinal healing.  

The AIP diet is a Paleo diet that eliminates foods that can cause intestinal inflammation until you heal on the inside, then more foods can be added back in.  The low histamine AIP diet will help reduce inflammation further.  

Histamine is released as part of the immune response in celiac disease.  Foods also contain various amounts of histamine or provoke histamine release.  Lowering the amount of histamine from foods helps.  The body, with help from B vitamins, can clear histamine, but if more histamine is consumed than can be cleared, you can stay in an inflammatory state for a long time.

Cutting out high histamine foods is beneficial.  Omit night shades which contain alkaloids that add to leaky gut syndrome found with celiac disease.  Night shades include tomatoes, peppers including bell peppers, potatoes and eggplants.  Processed foods like sausages and gluten-free processed products are high in histamines.  All Grains are removed from the diet because they are inflammatory and provoke histamine release.

Blood tests for deficiencies in B vitamins are notoriously inaccurate.  You can have vitamin deficiency symptoms before blood levels show a deficiency.  Blood levels do not accurately measure the quantity of B vitamins stored inside the cells where they are utilized.  The brain will order stored vitamins to be released from organs into the blood stream to keep the brain and heart supplied while deficiency occurs inside organs, like the gallbladder.  Gall bladder dysfunction is caused by a deficiency in Thiamine Vitamin B 1 and other B vitamins.  

The eight essential B vitamins are water soluble and easily lost with diarrhea and constipation, and the malabsorption and inflammation that occurs with celiac disease.  Because they are water soluble, the body can easily excrete any excess B vitamins in urine.  The best way to see if you are deficient is to take a B Complex and Thiamine in the form Benfotiamine and look for health improvements in the following weeks.  Most B Complex supplements contain Thiamine Mononitrate which is not bioavailable.  The body has a difficult time utilizing thiamine mononitrate because it doesn't break down easily.  Benfotiamine has been shown to promote intestinal healing.  

Remember your intestines are in a damaged, permeable state.  Treat them tenderly, like you would a baby until they heal.  You wouldn't feed a baby spicy bell peppers and hard to digest corn and nuts.  Change your diet so your intestines can heal.  

I use a combination of B12 Cobalamine, B 6 Pyridoxine, and B1 Benfotiamine for pain.  These three B vitamins have analgesic properties.  They relieve pain better than other otc pain relievers. 

Edited November 9 by knitty kitty
Typo correction

[rei.b]

6 hours ago, knitty kitty said:

I'm glad Naltrexone is helping with your pain.  Naltrexone is known to suppress tTg IgA and tTg IgG production, so it's not surprising that only your DGP IgG and DGP IgA are high.  

I was tested for food allergies and environmental allergies about 7 months before I started taking Naltrexone, so I don't think that is the cause for me, but that's interesting! 

The main thing with the celiac thing that is throwing me off is these symptoms are lifelong, but I don't have intestinal damage to correlate with lifelong undiagnosed celiac disease.

[knitty kitty]

Food and environmental allergies involve IgE antibodies.  IgE antibodies provoke histamine release from mast cells.  

Celiac disease is not always visible to the naked eye during endoscopy.  Much of the damage is microscopic and patchy or out of reach of the scope.  Did they take any biopsies of your small intestine for a pathologist to examine?  Were you given a Marsh score?

Why do you say you "don't have intestinal damage to correlate with lifelong undiagnosed celiac disease"?   Just curious.  

[rei.b]

42 minutes ago, knitty kitty said:

Food and environmental allergies involve IgE antibodies.  IgE antibodies provoke histamine release from mast cells.  

Celiac disease is not always visible to the naked eye during endoscopy.  Much of the damage is microscopic and patchy or out of reach of the scope.  Did they take any biopsies of your small intestine for a pathologist to examine?  Were you given a Marsh score?

Why do you say you "don't have intestinal damage to correlate with lifelong undiagnosed celiac disease"?   Just curious.  

I was tested for celiac at the same time, so I wasn't taking naltrexone yet.

I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.

[knitty kitty]

So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?  

DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.  

TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.  

There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.  

Do you carry genes for Celiac?  They frequently go along with EDS.

[rei.b]

2 hours ago, knitty kitty said:

So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?  

DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.  

TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.  

There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.  

Do you carry genes for Celiac?  They frequently go along with EDS.

Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms.

As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions. 

I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately. 

I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅

[knitty kitty]

@rei.b, 

I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.  

Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.

 SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months.

I do hope you'll consider the AIP diet and Benfotiamine.

Edited November 10 by knitty kitty
Typo correction