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My 8 yr old son has suffered with chronic diarrhea since he was a baby. After switching off formula his weight and height stalled. Today he is 44 lbs and off the weight charts completely again. We just recently started seeing a new GI DR. he re ran the celiac panel as this was not done since my son was 2 years old. His iga is high. (I know that can mean anything) and his deamitated anti gliadin IGA was 50. Dr said it could be celiac but wants to hold off on scope until we try something else first. I know one other person in here only tested positive for that test also. Is that common? Is 50 pretty high or low? Just trying to decide where to go from here. Dgp-igg was normal and ttg.

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Me.  I test positive to only the DGP IgA even in many follow up tests.  I have never had a positive on the TTG or EMA either.  My DGP IgG is always negative too.  Yet, my biopsies revealed a Marsh Stage IIIB which is moderate to severe small intestinal damage.  My main symptom was anemia. 

Why just the DGP IgA?  No one can say for sure, but it seems to be more common in small children.  A higher (out of range) Immunoglobulin A (IgA) can indicate autoimmune.  Mine is also very high.  I do not have any cancer which is another reason for an elevated IgA.  

What was the lab range for the DGP IgA (they can vary)?

Why not scope now?  What else is your doctor thinking it could be?  

I hate to see a little one suffer just because the doctor wants to see more positives on the panel.  It only takes one positive.  There is a reason why there are several tests on the celiac panel!  

 

Edited by cyclinglady

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Thanks for the response. My labs normal range is up to 19.9. We are currently on antibiotics to treat sibo.  He wants to see if that works first. Then he said if I wanted we could do a scope. His iga was 261. The range is up to 200. 

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I am NOT a doctor, but I disagree!  Your son many very well have SIBO, but treating SIBO without treating celiac disease is pretty useless in my non-medical opinion.   Is he concerned for your son’s current health? Should your son be in the hospital?  SIBO can be confirmed through biopsies too and better than a breath test.  Did he even have a SIBO breath test?  

A 50 is a definite positive with that range.  No doubt at all!  He probably did not test positive when he was two because kids do not produce antibodies.  Celiac researchers prefer to wait until the child is three.  Better chance of having antibodies then.  

https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

Consider a second opinion.  Better yet, contact a celiac center if you live near a large city (like Mayo Clinic, University of Chicago, etc.)

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Just know that the SIBO can resolve, but celiac disease will not without being a gluten free diet.  Getting a diagnosis can be critical for keeping him safe while at school.  Know too that celiac disease is like a chameleon.  Symptoms CAN change,    He may have diarrhea now, but later he might not.  Maybe just a touch of anemia or a broken bone.  Maybe depression or anxiety.  Maybe elevated liver panel results or constipation.  

Research and keep advocating for him!  He is lucky to have a Mom who cares (and you do cause you are here!)

Edited by cyclinglady

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My son is autistic so doing the breath test is not really an option unfortunately.  Luckily his dr is not saying no to the scope at all. He just thinks it really might be the sibo. He said hes less likely to have celiac with the other 2 tests being negative. We only have 9 days of antibiotic left so I guess I will just finish that then tell him to schedule it. It sounds pretty easy to do the scope so I think that's the best option at this point.

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He just broke a bone. Can celiac mess with the bones too? Thank you. I really do just want answers. This is my sons 4th gi as three previous gave me no help! I am close to Chicago so if this does not work out with this dr I may have to go that route (mayo) next. Thanks so much for the info. I swear I feel like a crazy person sometimes so it's nice to hear that my thought process might be right lol. 

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8 hours ago, stephanie86 said:

My son is autistic so doing the breath test is not really an option unfortunately.  Luckily his dr is not saying no to the scope at all. He just thinks it really might be the sibo. He said hes less likely to have celiac with the other 2 tests being negative. We only have 9 days of antibiotic left so I guess I will just finish that then tell him to schedule it. It sounds pretty easy to do the scope so I think that's the best option at this point.

Consider contacting the University of Chicago.  They are a leading research center for celiac disease.  It would definitely be worth a consult if your current GI does not go forward with the scope.

https://www.cureceliacdisease.org/

 It is NOT true that you need more than one positive in order to go through with the scope.  Granted your son’s result is not common.  But it is possible to have a positive DGP and negative TTG and EMA and still have celiac disease (like me).    Make sure this GI knows how to take the appropriate number of biopsies if the endoscopy is done.

“Small intestinal bacterial overgrowth (SIBO) is a medical condition in which a person has an unusually large population of bacteria in their small intestine.

SIBO is a complication of other digestive conditions, such as IBS, Crohn's disease, and celiac disease.”

https://www.medicalnewstoday.com/articles/324475.php#outlook

If the source of his “SIBO” is not treated it will most likely not resolve despite a round of antibiotics.  

My little teen niece went through four Ped GIs before the fourth ordered  a pill camera which caught her Crohn’s located in an area that our out of reach from BOTH scopes.  Celiac disease was firmly ruled out.  No positive on the blood panel and no small intestinal villi damage where is it most often found. I am sharing this because it is important to be persistent!   It might not be celiac disease but obviously something is seriously wrong with your son.  Diarrhea daily and for years is not normal.  

Yes, celiac disease can cause osteoporosis.  I have that too.  In children, it usually resolves once healed from celiac disease.  Me?  I am too old to grow bone to any degree, but I can try to help stop the progression (diet and exercise).    Of course, the fracture may just be a normal kid thing.  

Also, again, this is based on just my personal and family experience (I am not a doctor).  A family that happens to be riddled with autoimmune and generations of autism.  

 

 

Edited by cyclinglady

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Everything Cyclinglady said, but I would like to point out, SIBO is common with people with celiac, our damaged intestines make the perfect place for them to set up. I might suggest a dual treatment, I do not know if your doctor talked to you about it, but look into a SIBO diet in addition to the antibiotics. BUT be sure to keep your son eating gluten until they finish testing and the scope. The scope requires gluten daily for 2 weeks prior while blood test require 8-12weeks.
There are many attributes to bone issues with celiac, one of the major ones is issues with vitamin D leading to issues with absorbing calcium, there are other things at play also like fatty acids, iron, magnesium, potassium etc. When you have damaged intestines you do not get the nutrients you need from your food.

 

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On 6/27/2019 at 2:06 PM, Ennis_TX said:

Everything Cyclinglady said, but I would like to point out, SIBO is common with people with celiac, our damaged intestines make the perfect place for them to set up. I might suggest a dual treatment, I do not know if your doctor talked to you about it, but look into a SIBO diet in addition to the antibiotics. BUT be sure to keep your son eating gluten until they finish testing and the scope. The scope requires gluten daily for 2 weeks prior while blood test require 8-12weeks.
There are many attributes to bone issues with celiac, one of the major ones is issues with vitamin D leading to issues with absorbing calcium, there are other things at play also like fatty acids, iron, magnesium, potassium etc. When you have damaged intestines you do not get the nutrients you need from your food.

Stephanie86,

Everything Ennis_Tx said is good.

Try a dual treatment.....

The link cyclinglady provided for SIBO was a good one but I wanted to provide a couple more because they tie togehter how things might be connected a little more.

https://www.verywellhealth.com/signs-of-small-intestinal-bacterial-overgrowth-sibo-4125271

This is a great overview of how they often both occur in some (SIBO and Celiac) together.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3099351/

from very well health.

"How SIBO Develops

The bacterial overgrowth in SIBO is believed to result from alterations in the acidity (change in pH) of the small intestine and decreased movement of the intestinal muscles.

The pH changes make it easier for bacteria to grow in the small intestine and also allow different types of bacteria to thrive. The decreased intestinal motility keeps bacteria in the small intestine for a longer period of time than usual, disrupting the normal balance of digestive enzymes."

and these issues with SIBO can cause villous atrophy or at least a stressed villi mimicking some of the symptom's of Celiac treating them together will give you the best results.

https://www.verywellhealth.com/villous-atrophy-562583

The overview on SIBO points this commonality out.

In their article on the Celiac/SIBO connection(s). quoting their paragraph on it (SIBO) occurrence in Celiac's.

"Celiac Disease

Long-standing celiac disease can disturb gut motility, leading to small intestine dysmotility.48 A study of 15 celiac patients with persistent symptoms despite adherence to a strict gluten-free diet found that 66% had bacterial overgrowth on lactulose breath testing.49 All of these patients noted a resolution of their symptoms after being treated for bacterial overgrowth."

they are now finding out how gut imbalances can trigger brain imbalances.

see this latest research about dysbiosis in the gut can effect the brain.

https://www.psychologytoday.com/au/blog/the-athletes-way/201906/parkinsons-disease-causing-protein-hijacks-gut-brain-axis

It is called the gut/brain axis and when the 2nd brain (GI system) is unhealthy it effects the first brain.

also be sure to review any medicine's or OTC supplements like Miralax your child might be taking too.

Here is an article specifically about Miralax.

https://www.cbsnews.com/news/miralax-side-effects-in-kids-should-parents-be-concerned/

though commonly used Miralax can cause neurological or psychiatric reactions in children. .and I don't think this is well known.

I hope this is helpful but it is not medical advise.

Posterboy,

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On 6/27/2019 at 2:28 AM, stephanie86 said:

He just broke a bone. Can celiac mess with the bones too? Thank you. I really do just want answers. This is my sons 4th gi as three previous gave me no help! I am close to Chicago so if this does not work out with this dr I may have to go that route (mayo) next. Thanks so much for the info. I swear I feel like a crazy person sometimes so it's nice to hear that my thought process might be right lol. 

Hi Stephanie,

Yes, celiac disease can cause bone weakness.  The small intestine is where nutrients are absorbed.  The small intestine is also the area likely to be damaged by celiac disease.  Without the ability to absorb nutrients (vitamins, minerals, fats, carbohydrates) our bodies cannot heal and grow.  People can then become lethargic and irritable and weak.  Think of it is starving on a full stomach.

It's likely he has trouble with digesting milk sugar (lactose) because celiac destroys the villi that make the enzyme to digest it.. The resulting lactose intolerance can cause bloating, gas, diarrhea and discomfort.  You might find he does a little better by taking him off dairy for now.

He will need calcium, vitamin D and boron to heal his broken bone.  But he won't be able to absorb those nutrients well with his damaged small intestine.  So getting him off gluten is very important.  If he is celiac, then once he goes gluten-free his body can begin to heal.   You may find he is low on B-12 also.  In time the villi lining the small intestine will regrow and he will be able to absorb nutrients well again.

The suggestion of the University of Chicago Celiac Center is good.  I'd give them a call if I were you and see if they can help.  They have experts there who can handle the celiac testing.

Edited by GFinDC

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Gosh, I'm so sorry you are going through this with this doctor. This does not sound even close to proper diagnosis methods for Celiac's.  Please just go to a different doctor, call the office and ask to make sure they are more informed about proper Celiac's diagnosis.

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Thanks for the responses everyone! The antibiotics did not fix his problem. I just messaged his dr this morning. Hopefully he decides to go forward with the scope. I will keep you all posted and let you know what's going on. Thanks so much!

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On 7/1/2019 at 5:18 PM, GFinDC said:

Hi Stephanie,

Yes, celiac disease can cause bone weakness.  The small intestine is where nutrients are absorbed.  The small intestine is also the area likely to be damaged by celiac disease.  Without the ability to absorb nutrients (vitamins, minerals, fats, carbohydrates) our bodies cannot heal and grow.  People can then become lethargic and irritable and weak.  Think of it is starving on a full stomach.

It's likely he has trouble with digesting milk sugar (lactose) because celiac destroys the villi that make the enzyme to digest it.. The resulting lactose intolerance can cause bloating, gas, diarrhea and discomfort.  You might find he does a little better by taking him off dairy for now.

He will need calcium, vitamin D and boron to heal his broken bone.  But he won't be able to absorb those nutrients well with his damaged small intestine.  So getting him off gluten is very important.  If he is celiac, then once he goes gluten-free his body can begin to heal.   You may find he is low on B-12 also.  In time the villi lining the small intestine will regrow and he will be able to absorb nutrients well again.

The suggestion of the University of Chicago Celiac Center is good.  I'd give them a call if I were you and see if they can help.  They have experts there who can handle the celiac testing.

Hi just wanted to add to this that cutting dairy does help but does not fix it. With dairy his stools were VERY mucousy and so acidic like that it caused instant diaper rashes. So that's very interesting! We have a scope now scheduled for August 6th. Very anxious to see if we can find answers. I need to up his gluten I think a bit. Alot of the stuff he eats is "gluten free" like cereals. So it only gives him trace amounts. He eats no bread. He will eat chicken nuggets so i can up those and also more pizza which i try to limit due to dairy lol. Or maybe just only buy him non gluten free cereals. I know it's supposed to be like 2 slices of bread a day before the scope so I want to make sure I do that.

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Lactose intolerance often resolves for many celiacs (like me) unless you are one of millions who are genetically lactose intolerant.   You are correct in that he needs to consume gluten (equivalent to 2 slices of bread) per day up to the endoscopy.  You can reduce or eliminate lactose for now as this could bring him some relief.  

I am so glad you are getting that endoscopy.  This little guy is suffering!  They can verify SIBO, check for gastric issues, etc., besides looking for celiac disease.  

This girl, Nicole, was featured in one of the gluten-free magazines.  She did have celiac disease, but she also had a congenital defect of her gut.  Doctors kept dismissing her.    I guess I am encouraging you to continue to keep advocating for your son!  

https://m.youtube.com/watch?v=i9JIRqe6wrM

 

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So we had the scope done today. Nothing was obviously celiac so waiting on biopsy. He did notice a few small "erosions" in the duodenum. In the pic they look like white spots. No bleeding. He biopsied them. He said it could be caused by celiac, allergies or other things. Anyone else have these erosions? Thanks for all your help!

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When I was diagnosed over five years ago, my GI had an older scope.  He told me that everything looked good during the endoscopy.  Biopsies though revealed moderate to severe patches of damage.  😔.  My new GI has a much stronger magnification on his scope.  He could see my healthy villi.  I did not have to wait for the biopsies.  The gluten free diet works!  

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Hi Stephanie,

Here is an article on the Marsh stages system of rating celiac damage.

https://www.verywellhealth.com/marsh-stage-of-celiac-disease-562711

The doctors often can't see celiac damage while doing the scope.  So they take biopsies (4 to 6) and send them a lab to be viewed with a microscope.  If they do see damage during the endoscopy that indicates fairly severe trauma to the gut.

You might be interested in reading  up on gluten ataxia.  UBO's are unidentified white spots that show up on brain imaging.  Celiac disease can affect the brain and nerves cells.  People with gluten ataxia (a celiac caused disorder) may have trouble walking and coordinating muscles.

B vitamins may be helpful, especially B-12.  Since celiac can impair the absorption of nutrients, it can affect all areas of the body due to malabsorption.  Also, the immune system can attack any area of the body.

Sometimes people think that going gluten-free will cure all their symptoms in a few weeks.  But it can take 18 months or more for the gut to heal.

Your son may be a candidate for B-12 injections.  But all the nutrients are important and needed, including the trace minerals.

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