Celiac and Diabetic Gastroparesis

[The Mother]

Hi All, My son is a 28 year old type 1 diabetic with celiac disease. He is currently in the hospital after becoming very ill 2 days ago, then moved to ICU. They have not determined exactly what the cause of his illness, but it sounds like they are leaning toward gastroparesis. I am doing what I can to research and be informed so I can be a support system for him. He has really been struggling, especially the past couple of months, with nerve pain down his legs, anxiety and panic attacks, fatigue, weight loss, light-headedness, very pale, etc. Are these symptoms that any of you had prior to your diagnosis? Deep down I have felt there was some underlying cause. Any input would be helpful. It is really hard right now because of Covid-19, I can't even visit him. Thanks!

[cyclinglady]

I am sorry that your son is ill and in the hospital.  How is he been managing his diabetes and his celiac disease?  His symptoms could be attributed to actively flaring celiac disease or uncontrolled diabetes.  

Maybe I am confused.  Has he been diagnosed with celiac disease?  If not, as a type 1 diabetic, he should be screened for celiac disease.  

[The Mother]

13 minutes ago, cyclinglady said:

I am sorry that your son is ill and in the hospital.  How is he been managing his diabetes and his celiac disease?  His symptoms could be attributed to actively flaring celiac disease or uncontrolled diabetes.  

Maybe I am confused.  Has he been diagnosed with celiac disease?  If not, as a type 1 diabetic, he should be screened for celiac disease.  

Thank you! His diabetes is under control, and he was diagnosed with celiac last year. Although, his blood sugars have been out of whack the past couple of months. I have read that that happens frequently with Diabetic Gastroparesis.

[cyclinglady]

Yes, gastroparesis can be a complication of diabetes.  I have experienced it myself.  Besides, celiac disease (which is in remission), I have autoimmune gastritis.  This can lead to B-12 deficiencies.  I also have Hashimoto’s too.   Food can stay in my stomach for hours.  I am pretty sure it is autoimmune related.  It comes and goes.  Here is an article about this subject.  

https://www.mayoclinic.org/medical-professionals/neurology-neurosurgery/news/autoimmune-gi-dysmotility-a-new-direction/mac-20429479

https://health.clevelandclinic.org/gastroparesis-a-mysterious-stomach-disorder-thats-on-the-rise-in-teenage-girls-and-women-in-their-20s/

How is his celiac disease?  Has he had any follow up testing (repeat antibodies testing which includes both the DGP and TTG).  This can help determine if he is dietary compliant.  Celiacs also should be screened for vitamin and mineral deficiencies.  For example, low Vitamin B-12 can cause nerve damage.  

It can be very hard to manage both conditions, especially in a young person.  Even at 26, he probably wants to fit in.  

Is the hospital able to provide gluten free food for him?  

My heart goes out to you.  I hope you are able to talk with his medical staff via Zoom or phone call.  I know it helped me to have a cousin talk to my surgeon when I had to have my gallbladder out while on a business trip.  It was terrible to be alone.  When you are sick, you can not think very straight.  

Edited May 14, 2020 by cyclinglady

[trents]

My heart goes out to you. We always suffer with our children when they suffer.

As CL asked, has your son been diligent to avoid gluten or do you know? Having worked in a hospital setting for many years before retiring, I can tell you it is not uncommon for young type I diabetics to be in denial about their need to manage their diabetes and to have one diabetic crisis after another. By the time they get it through their heads that they need to take this seriously there is often significant deterioration of the vascular and neurological systems already. Then you throw in Celiac Disease and the need to be careful of one more thing and it's just overwhelming. There is the great temptation to say, "What the heck! I'm just going to live my life for as long as I can" and to throw caution to the wind. Celiac disease can cause nerve damage as well and fatigue is very common with the celiac disease package of symptoms as is weight loss. Because of the damage that celiac disease causes to the lining of the small bowel, nutrient deficiencies typically accrue that create any number of health issues. 

This is certainly an item or our prayers.

[The Mother]

10 hours ago, cyclinglady said:

Yes, gastroparesis can be a complication of diabetes.  I have experienced it myself.  Besides, celiac disease (which is in remission), I have autoimmune gastritis.  This can lead to B-12 deficiencies.  I also have Hashimoto’s too.   Food can stay in my stomach for hours.  I am pretty sure it is autoimmune related.  It comes and goes.  Here is an article about this subject.  

https://www.mayoclinic.org/medical-professionals/neurology-neurosurgery/news/autoimmune-gi-dysmotility-a-new-direction/mac-20429479

https://health.clevelandclinic.org/gastroparesis-a-mysterious-stomach-disorder-thats-on-the-rise-in-teenage-girls-and-women-in-their-20s/

How is his celiac disease?  Has he had any follow up testing (repeat antibodies testing which includes both the DGP and TTG).  This can help determine if he is dietary compliant.  Celiacs also should be screened for vitamin and mineral deficiencies.  For example, low Vitamin B-12 can cause nerve damage.  

It can be very hard to manage both conditions, especially in a young person.  Even at 26, he probably wants to fit in.  

Is the hospital able to provide gluten free food for him?  

My heart goes out to you.  I hope you are able to talk with his medical staff via Zoom or phone call.  I know it helped me to have a cousin talk to my surgeon when I had to have my gallbladder out while on a business trip.  It was terrible to be alone.  When you are sick, you can not think very straight.  

Thank you so much, this is very helpful information! No, he has not had additional testing for the Celiac. I am not very pleased with his doctor at this point, because he has presented with an increasing number of issues leading up to this, and she has only addressed them each individually, e.g. physical therapy for the pain down his legs; more careful monitoring for inconsistent blood sugars; counseling and a new (high side-effects) med for his anxiety; etc. I feel that on top of his Diabetes and Celiac, she should be trying to connect the dots. I honestly think the new med is what threw him into this now serious situation, as he had just started it this week. I have been able to speak to his nurses occasionally. Thanks again! Any information is very helpful!

[cyclinglady]

Oh, anxiety is SO common in celiacs or anyone with Autoimmune diseases.  Just managing an illness can make anyone anxious.  Not to mention that autoimmune is usually systemic.  Like celiac disease can harm other parts of the body like joints, nerves and the brain.  Side effects for drugs to treat anxiety (like benzos/Xanax) are super addictive and hard to get off (like it can cause death).   It is our next opioid crisis.  Please research this and if he needs them, have them prescribed by a psychiatrist (MD) and not a general practitioner.  I know this from experience.  I have a family member who is now addictive to these.  Ugh! 

Followup care:

https://www.beyondceliac.org/research-news/new-celiac-disease-guidelines-emphasize-follow-up-care/

This follow-up care is critical.  My PCP orders annual tests for me during my annual check up.  If I suspect a gluten exposure and I am not recovering, I email my GI who orders a complete celiac panel.  At least if I know my celiac disease is active, I know where I stand. 

I have a teen who is officially adult.  But she will always be my kid.  Keep advocating for him.  ❤️

Edited May 14, 2020 by cyclinglady

[trents]

The Mother,

Does your son's healthcare insurance allow him to directly schedule appointments with specialists? Seems like to me he needs to be connected with a gastroenterologist. 

[Posterboy]

17 hours ago, The Mother said:

Hi All, My son is a 28 year old type 1 diabetic with celiac disease. He is currently in the hospital after becoming very ill 2 days ago, then moved to ICU. They have not determined exactly what the cause of his illness, but it sounds like they are leaning toward gastroparesis. I am doing what I can to research and be informed so I can be a support system for him. He has really been struggling, especially the past couple of months, with nerve pain down his legs, anxiety and panic attacks, fatigue, weight loss, light-headedness, very pale, etc. Are these symptoms that any of you had prior to your diagnosis? Deep down I have felt there was some underlying cause. Any input would be helpful. It is really hard right now because of Covid-19, I can't even visit him. Thanks!

The Mother,

Great User Name...

This is about Gastroparesis and Diabetes....they are definitely linked conditions...you might want to also research some on SIBO....it is possible for a Celiac to have both SIBO and Celiac disease together...and I think it might of been so in my case....but I only "officially" received a Celiac diagnosis....and certainly true for diabetics too if the research is to be believed.....but medicine is so compartmentalized today....they don't treat the whole person anymore....that is for Naturopaths etc...who study Vitamin's instead of medicines' instead.....that is why they are medical doctor's and not nutritionist's instead...

Here is some research that shows how often this conditions happen together...the prevalence rate of them occurring together might surprise you....I know it did me...from their Metabolic disorders paragraph so you won't have to read it all...unless you want too...It is a nice overview on SIBO

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

Metabolic Disorders

"Long-standing and poorly controlled diabetes can injure the enteric nervous system leading to disordered GI motility. Diabetic gastroparesis and neuropathic small bowel motility disorders are both associated with SIBO (see above). A recent study found that SIBO was present in 43% of diabetic patients with chronic diarrhea, and 75% had a significant improvement in their symptoms after being treated with antibiotics.⁴⁴ Additionally, in a group of 82 diabetic patients, of those who had carbohydrate malabsorption on an oral glucose tolerance test, 75% were diagnosed with SIBO."⁴⁵

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

Posterboy

[The Mother]

2 hours ago, cyclinglady said:

Oh, anxiety is SO common in celiacs or anyone with Autoimmune diseases.  Just managing an illness can make anyone anxious.  Not to mention that autoimmune is usually systemic.  Like celiac disease can harm other parts of the body like joints, nerves and the brain.  Side effects for drugs to treat anxiety (like benzos/Xanax) are super addictive and hard to get off (like it can cause death).   It is our next opioid crisis.  Please research this and if he needs them, have them prescribed by a psychiatrist (MD) and not a general practitioner.  I know this from experience.  I have a family member who is now addictive to these.  Ugh! 

Followup care:

https://www.beyondceliac.org/research-news/new-celiac-disease-guidelines-emphasize-follow-up-care/

This follow-up care is critical.  My PCP orders annual tests for me during my annual check up.  If I suspect a gluten exposure and I am not recovering, I email my GI who orders a complete celiac panel.  At least if I know my celiac disease is active, I know where I stand. 

I have a teen who is officially adult.  But she will always be my kid.  Keep advocating for him.  ❤️

Thank you so much, you have been very helpful! BTW, they did the endoscopy, and it is gastroparesis ?

[The Mother]

21 minutes ago, Posterboy said:

The Mother,

Great User Name...

This is about Gastroparesis and Diabetes....they are definitely linked conditions...you might want to also research some on SIBO....it is possible for a Celiac to have both SIBO and Celiac disease together...and I think it might of been so in my case....but I only "officially" received a Celiac diagnosis....and certainly true for diabetics too if the research is to be believed.....but medicine is so compartmentalized today....they don't treat the whole person anymore....that is for Naturopaths etc...who study Vitamin's instead of medicines' instead.....that is why they are medical doctor's and not nutritionist's instead...

Here is some research that shows how often this conditions happen together...the prevalence rate of them occurring together might surprise you....I know it did me...from their Metabolic disorders paragraph so you won't have to read it all...unless you want too...It is a nice overview on SIBO

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

Metabolic Disorders

"Long-standing and poorly controlled diabetes can injure the enteric nervous system leading to disordered GI motility. Diabetic gastroparesis and neuropathic small bowel motility disorders are both associated with SIBO (see above). A recent study found that SIBO was present in 43% of diabetic patients with chronic diarrhea, and 75% had a significant improvement in their symptoms after being treated with antibiotics.⁴⁴ Additionally, in a group of 82 diabetic patients, of those who had carbohydrate malabsorption on an oral glucose tolerance test, 75% were diagnosed with SIBO."⁴⁵

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

Posterboy

Like your name too, Posterboy!

Thank you as well for this information. Ever since my son became diabetic, right after he turned 11, I have continued to research so I can be an advocate and support person for him. What I am glad for with this diagnosis, is that he now has some answers and can have peace of mind for several other issues he has been having. He is a big, strong, athletic guy who has been cut down by this (going from 210 lbs to under 180). Hopefully now that we know what we're dealing with, he can get more back to his normal self.

Please keep the information coming, I really appreciate it!

[The Mother]

2 hours ago, trents said:

The Mother,

Does your son's healthcare insurance allow him to directly schedule appointments with specialists? Seems like to me he needs to be connected with a gastroenterologist. 

No, he has to go through his GP. Hopefully now he will be linked with a GI specialist. The problem where we live, appointments are always 3+ months out.

[The Mother]

17 hours ago, trents said:

My heart goes out to you. We always suffer with our children when they suffer.

As CL asked, has your son been diligent to avoid gluten or do you know? Having worked in a hospital setting for many years before retiring, I can tell you it is not uncommon for young type I diabetics to be in denial about their need to manage their diabetes and to have one diabetic crisis after another. By the time they get it through their heads that they need to take this seriously there is often significant deterioration of the vascular and neurological systems already. Then you throw in Celiac Disease and the need to be careful of one more thing and it's just overwhelming. There is the great temptation to say, "What the heck! I'm just going to live my life for as long as I can" and to throw caution to the wind. Celiac disease can cause nerve damage as well and fatigue is very common with the celiac disease package of symptoms as is weight loss. Because of the damage that celiac disease causes to the lining of the small bowel, nutrient deficiencies typically accrue that create any number of health issues. 

This is certainly an item or our prayers.

Thank you so much, I really appreciate the input and support!

[trents]

I take it you are not in the US.

[The Mother]

2 minutes ago, trents said:

I take it you are not in the US.

We are in the US, near Seattle

[trents]

Not far from me, then. We're about 30 min. south of Olympia.

[Posterboy]

The Mother,

I still think you need to look into SIBO....it can mimic gastroparesis and it (SIBO) has been shown to slow bowel transit times...

Here is a study about it entitled "Small Intestinal Transit Time Is Delayed in Small Intestinal Bacterial Overgrowth"

https://pubmed.ncbi.nlm.nih.gov/25319735/

Slow bowel transit tells what is happening not why....

SIBO has been linked to Low stomach acid...and could be why his stool transit time takes longer....

Dr. Jockers has a nice article explaining how your son can test this theory...

https://drjockers.com/5-ways-test-stomach-acid-levels/

The Baking Soda test (explained in detail) in link above can help you and your son confirm his slow bowel transit is from low stomach acid going undiagnoised/misdignosed.

I wrote a posterboy blog post about this phenomena so I wouldn't have to type soo much...

If I had to write it again today...I might say some more about SIBO and Celiac being associated conditions...

If you are up for a long study this research will help you...

https://www.omicsonline.org/open-access/small-intestinal-bacterial-overgrowth-sibo-2161-069X.1000225.php?aid=31428

Where they say in the Prevalence paragraph quoting

"In celiac disease, a prevalence rate as high as 66% has been reported, again based on lactulose hydrogen breath testing [2]. A recent study found that SIBO was present in 43% of diabetic patients with chronic diarrhea, and 75% had a significant improvement in their symptoms after being treated with antibiotics [3]."

I must quit for now before it gets too long! Have a nice weekend and stay safe and keep advocating for your son...

Again, I hope it is helpful but it is not medical advise.

Posterboy,

[The Mother]

1 hour ago, Posterboy said:

The Mother,

I still think you need to look into SIBO....it can mimic gastroparesis and it (SIBO) has been shown to slow bowel transit times...

Here is a study about it entitled "Small Intestinal Transit Time Is Delayed in Small Intestinal Bacterial Overgrowth"

https://pubmed.ncbi.nlm.nih.gov/25319735/

Slow bowel transit tells what is happening not why....

SIBO has been linked to Low stomach acid...and could be why his stool transit time takes longer....

Dr. Jockers has a nice article explaining how your son can test this theory...

https://drjockers.com/5-ways-test-stomach-acid-levels/

The Baking Soda test (explained in detail) in link above can help you and your son confirm his slow bowel transit is from low stomach acid going undiagnoised/misdignosed.

I wrote a posterboy blog post about this phenomena so I wouldn't have to type soo much...

If I had to write it again today...I might say some more about SIBO and Celiac being associated conditions...

If you are up for a long study this research will help you...

https://www.omicsonline.org/open-access/small-intestinal-bacterial-overgrowth-sibo-2161-069X.1000225.php?aid=31428

Where they say in the Prevalence paragraph quoting

"In celiac disease, a prevalence rate as high as 66% has been reported, again based on lactulose hydrogen breath testing [2]. A recent study found that SIBO was present in 43% of diabetic patients with chronic diarrhea, and 75% had a significant improvement in their symptoms after being treated with antibiotics [3]."

I must quit for now before it gets too long! Have a nice weekend and stay safe and keep advocating for your son...

Again, I hope it is helpful but it is not medical advise.

Posterboy,

Thank you, Posterboy. I will definitely look into this information. I appreciate your time and help!

The Mother

[Wabbit]

The weight loss, fatigue, and light headedness make me wonder if they have tested your son for Addison’s Disease...

(I started out with Type 1 Diabetes at age 18, and have since added Addison’s, Graves, and Celiac to my pedigree!)

[The Mother]

On 5/17/2020 at 5:43 AM, Wabbit said:

The weight loss, fatigue, and light headedness make me wonder if they have tested your son for Addison’s Disease...

(I started out with Type 1 Diabetes at age 18, and have since added Addison’s, Graves, and Celiac to my pedigree!)

 

On 5/17/2020 at 5:43 AM, Wabbit said:

The weight loss, fatigue, and light headedness make me wonder if they have tested your son for Addison’s Disease...

(I started out with Type 1 Diabetes at age 18, and have since added Addison’s, Graves, and Celiac to my pedigree!)

I have wondered the same. Although, I had undiagnosed Celiac for numerous years, never tested for it even though I had all of the symptoms. Now my primary care doc is a Naturopath, and I am doing much better. I just got my son set up with him so that we can work on getting him properly cared for, as the pharmaceuticals they prescribed him upon his release from the hospital have side effects that we are not willing to gamble with.

BTW, to all, my son is home and feeling better. I will keep you updated. Thanks again to everyone!

On 5/15/2020 at 7:01 PM, The Mother said:

Thank you, Posterboy. I will definitely look into this information. I appreciate your time and help!

The Mother

Hello again Posterboy,

My Naturopath also mentioned the possibility of my son potentially having SIBO, so something we will definitely follow up on.

Have a great day!

[Beverage]

Have you heard about Dr. Jonathan Wright, a very well known naturopathic doctor and he is located in TUKWILA (just south of Seattle) ! 

He has a local radio show on Saturdays 3pm.  I had gone round and round with traditional medicine and got nowhere on my ever increasing issues, severe allergies, unrelenting hives, beri beri, kidney failure (that I was told by traditional doc would never come back), pre-diabetic, weird super high blood pressure at times, constantly fighting colds and flu. 

Then I got laid off and since I had time, I got an appointment to see a doc in his office.   I had absolutely no intestinal issues, but within 15 minutes of reviewing my long medical history and our conversation he said I think you have Celiac's, we just have to prove it.  And he was absolutely right.  You need someone that can look at the whole person.  Surprisingly the insurance I had at the time paid pretty well for the visits, just not for supplements.  But he saved my life as I was going down hill FAST.  My kidneys have almost totally recovered, all medical tests are so improved, I feel much more even and stable.  Here's the clinic:  https://tahomaclinic.com/