Connecting the dots

[Artil]

After a horrible and scary 3 years of every two weeks in the hospital for fluids to correct metabolic ketoacidosis, seen by: nephrologist, gastroenterologists, Endocronologist, biochemical geneticist, allergy and immunology, and several more specialists, they all shrugged thier shoulders and said make sure he eats every 4 hours….they could not diagnose why he would have the KetoAcodosis without Diabetes type 1 and he was hypoglycemic- he also had intussusception, bleeding peptic ulcers 

I should add this is a young kid started when he was 6 and he is 9 now.
I finally after much research on my own with NO help from all the above mentioned doctors that “perhaps” he should be tested for celiac disease - after reading about celiac crisis. 
He was screened and came back strongly positive for the antibodies. 
My logic is: from malabsorption he is essentially starving although he eats and that is how the KetoAcidosis starts and then he can’t absorb the glucose due to the missing enzyme and he has hypoglycemia- he has all the electrolyte deficiencies as well. Next step biopsy, and also screening for the damage already done. 
I felt very alone in this and was ridiculed, blamed, mom shamed, and overall ignored. 
I feel our lives will change once the treatment is in place with diet - but after the storm I am left wondering: where is the voice for this disease?? Most people put it in the category of an allergy, or worse a fad diet. (In the long run, that was beneficial because it elevated recipes) I am baffled by the ignorance

first post I’m a “newbie”

 

[trents]

If the serum antibody tests were strongly positive, I see no reason to have the endoscopy/biopsy done.

IMO, the next step would be for you to put your son on a strict gluten free diet and some high potency vitamins to get a jump start on the vitamin and mineral deficiencies. In particular, a good multi vitamin together with high-potency B-complex and B12 on the side. Make sure all vitamins and supplements are gluten free. Costco's Nature Made line is a good choice. Don't worry about toxicity of taking too many B vitamins. They are water soluble and any excess will be peed out. I would also look into a D3 supplement but that is a fat soluble vitamin so research what is age appropriate and safe.

By the way, I applaud your tenacity! Way to go mom! It paid off. I thank God for mothers' love.

Edited August 7, 2021 by trents

[RMJ]

I think the voice for celiac disease is substantially muted by those without celiac disease who treat gluten free as a fad diet. 

It also is very strange that many doctors seem “anti-celiac.” I once asked a doctor how a proposed test (unrelated to celiac) would affect my intestines because I have celiac disease.  His response, “You probably don’t have that.”  My response, “My biopsy last week says I do.”

Good for you for being such an advocate for your son and figuring out what was wrong.  If you go ahead with the biopsy, be sure to have him continue eating gluten until then, difficult as that is. This is especially important if there will be a delay prior to the biopsy; enough healing might take place that the doctors don’t find damage.

What enzyme is missing that he can’t absorb glucose? Was that diagnosed by genetics?

[Artil]

Thank you! 
it’s been an insane struggle. I agree with both statements about the anti celiac sentiment and also perhaps skipping biopsy- I have grave concerns for waiting as he has been so sick. 

He had genetic testing done to look for mitochondrial mutations that could explain his constant (about every other month and becoming more frequent) metabolic ketoacidosis- the whole Exome sequencing came back negative for any of that. 
 

When doing my research i went back to looking at celiac disease after his gastroenterologist dismissed it and also said it doesn’t cause metabolic acidosis or bleeding ulcers 

turns out: it does. It’s a severe reaction called Celiac Crisis. It’s why I called the topic connecting the dots- because his biochemical geneticist said that she had only heard of diabetics having this with celiac - I know they are connected, but he doesn’t have DT1, so I just kept looking what could it be??? 
 

I should say that this is my logic to what is happening to my son, and that the only thing a doctor has diagnosed was the antibody test of IgA and tTG- 

along with his 5 years of extreme undiagnosed mysterious illness.

I think there should be more research done with Celiac Disease as a whole body disease because it includes the pancreas, liver, lungs, and so on. I also think that Celiac is a combination of metabolic and gastric illness for a person. 
 

thanks for reading my post and commenting it helps to not feel so alone. It’s astonishing how overlooked this disease is. 

[Artil]

I should directly answer the enzyme question tho: 

my theory is that if the villi are damaged then all the enzymes are damaged and cannot function properly producing malabsorption- one cause of metabolic ketoacidosis is starvation (there are only three things that cause this 1.diabetes 2.alcohol 3.starvation) 

so in essence an undiagnosed person could be considered starving and produce ketones because of this. He also has extreme hypoglycemia and my theory is that the enzymes that turn the sugars into a digestible form for energy aren’t working right so the body blood sugar plummets in a celiac crisis. 

to clarify this is me thinking and researching. I am finding more and more legitimate articles and medical studies around this topic- and I’m reading them all. 
Mostly o am looking forward to my son getting better and I am 100% sure he will. 
The vitamins are crucial too thank you all

 

[RMJ]

The enzyme in villi tips that is frequently low in undiagnosed celiacs is lactase, which breaks lactose (from dairy) into glucose and galactose. When not broken down it can cause diarrhea.

Of course damaged intestines could cause all sorts of absorption problems, followed by nutrient deficiencies and problems due to those deficiencies. 
There was a recent thread where someone recommended a pediatric “liquid food” that was quite complete and well balanced. Nutrients were in forms easier to absorb. Maybe that would help your son.

[RMJ]

Here is the website from the company that makes the foods.  They are gluten free.

https://essentiallybetter.com

 

[Artil]

48 minutes ago, RMJ said:

Here is the website from the company that makes the foods.  They are gluten free.

https://essentiallybetter.com

 

OMG. 
I have been looking FOREVER for a unflavored thing like this. 
this is INCREDIBLY HELPFUL. 
thank you 🙏❤️

[knitty kitty]

@Artil,

I suggest you look into Gastrointestinal Beriberi which is caused by a deficiency in Thiamine (Vitamin B1).  

"Elevated Lactate Secondary to Gastrointestinal Beriberi"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4699997/

Thiamine is required to convert carbohydrates into energy.  When thiamine is low, our bodies take a short cut to save on thiamine usage.  Our bodies start burning proteins (our own muscles) and fat stores.  This results in ketones as a byproduct.  Lactic acid builds up, hence metabolic acidosis.  Mitochondria don't work without thiamine.

Symptoms can wax and wane depending on the amount of thiamine received in the diet.  

Bleeding peptic ulcers are a cause of Thiamine deficiency.

"Wernicke's Encephalopathy in a Patient with Peptic Ulcer Disease"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3135057/

 

"Severe lactic acidosis reversed by thiamine within 24 hours"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3388689/

 

"Rare Presentation of Thiamine Deficiency as Gastrointestinal Syndrome"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4175961/

 

"Neurological, Psychiatric, and Biochemical Aspects of Thiamine Deficiency in Children and Adults"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6459027/#idm140604396876032title

 

And further information on thiamine and my experience with thiamine deficiency are here...

Hope this helps!

P. S.  I wanted to add that ketosis happens in diabetics because diabetics are thiamine deficient (78 to 96% depending on which study is read).  

 

Edited August 8, 2021 by knitty kitty
Add more information

[Artil]

Thank you! 
I have looked into this topic- I clicked on every article and read them- it makes me think about thiamine deficiency being another symptom of celiac disease and all deficiency  a component of celiac crisis. 
what is interesting about his Metabolic Ketoacidosis is that it’s not caused by lactic acid. 

also sometimes the anion gap is normal- celiac crises covers every single “box” with the exception of diarrhea for him. 
 

the other part of connecting the dots is that I start thinking about bread. And gluten. And other wheat products. And when did celiac arise  as a disease. The source of the disease is gluten. (?)

And I’m wondering why? This has not been answered by science or medicine- I think the answer probably lies in how food is produced and not being actual food. I realize this gets into tinfoil hat territory, but when trying to connect the dots it’s worth investigating. 

this is a very bad and crippling disease- leading to all sorts of fatal problems. 
the awareness needs to happen - I think most people look upon it as an allergy. 
it’s also viewed as a gastro disease - but it isn’t entirely. There is a huge piece of information missing and research missing. 
For now, I’m focused on getting Artil better, 

I think vitamin therapy is a component of “getting better”

my doctor when Artil was diagnosed said “the only treatment I know is gluten free diet” 

but there is much more that has to be done, most importantly to correct the damage that has already been done to the whole body. Thiamine included 

Thank you for the articles, I think I will re-read them and gain more insite 

thank you 

[RMJ]

Doctor: “The only treatment I know is gluten free diet.”

When I think about it, the gluten free diet doesn’t “treat” celiac the way some drugs treat diseases (like an antibiotic killing bacteria).  It just stops the source of the damage. The body then must heal itself.  When there is a lot of damage, that will be difficult and additional help may be needed (extra vitamins, easily absorbed nutrients, etc.)

[trents]

1 hour ago, Artil said:

Thank you! 

. . . the other part of connecting the dots is that I start thinking about bread. And gluten. And other wheat products. And when did celiac arise  as a disease. The source of the disease is gluten. (?)

And I’m wondering why? This has not been answered by science or medicine- I think the answer probably lies in how food is produced and not being actual food. I realize this gets into tinfoil hat territory, but when trying to connect the dots it’s worth investigating.

There is historical evidence that celiac disease has been around for many centuries, long before the advent of modern agriculture with it's herbicides, pesticides, and hybridization. There are many theories as to the apparent increase in celiac disease which include hybridization to increase the amount of gluten and the abuse of antibiotics. Celiac disease is classified as an autoimmune inflammatory process that is triggered by the ingestion of gluten.

[Artil]

1 hour ago, RMJ said:

Doctor: “The only treatment I know is gluten free diet.”

When I think about it, the gluten free diet doesn’t “treat” celiac the way some drugs treat diseases (like an antibiotic killing bacteria).  It just stops the source of the damage. The body then must heal itself.  When there is a lot of damage, that will be difficult and additional help may be needed (extra vitamins, easily absorbed nutrients, etc.)

 

1 hour ago, trents said:

There is historical evidence that celiac disease has been around for many centuries, long before the advent of modern agriculture with it's herbicides, pesticides, and hybridization. There are many theories as to the apparent increase in celiac disease which include hybridization to increase the amount of gluten and the abuse of antibiotics. Celiac disease is classified as an autoimmune inflammatory process that is triggered by the ingestion of gluten.

 

1 hour ago, trents said:

There is historical evidence that celiac disease has been around for many centuries, long before the advent of modern agriculture with it's herbicides, pesticides, and hybridization. There are many theories as to the apparent increase in celiac disease which include hybridization to increase the amount of gluten and the abuse of antibiotics. Celiac disease is classified as an autoimmune inflammatory process that is triggered by the ingestion of gluten.

Thank you! 
I have looked into this topic- I clicked on every article and read them- it makes me think about thiamine deficiency being another symptom of celiac disease and all deficiency  a component of celiac crisis. 
what is interesting about his Metabolic Ketoacidosis is that it’s not caused by lactic acid. 

also sometimes the anion gap is normal- celiac crises covers every single “box” with the exception of diarrhea for him. 
 

the other part of connecting the dots is that I start thinking about bread. And gluten. And other wheat products. And when did celiac arise  as a disease. The source of the disease is gluten. (?)

And I’m wondering why? This has not been answered by science or medicine- I think the answer probably lies in how food is produced and not being actual food. I realize this gets into tinfoil hat territory, but when trying to connect the dots it’s worth investigating. 

this is a very bad and crippling disease- leading to all sorts of fatal problems. 
the awareness needs to happen - I think most people look upon it as an allergy. 
it’s also viewed as a gastro disease - but it isn’t entirely. There is a huge piece of information missing and research missing. 
For now, I’m focused on getting Artil better, 

I think vitamin therapy is a component of “getting better”

my doctor when Artil was diagnosed said “the only treatment I know is gluten free diet” 

but there is much more that has to be done, most importantly to correct the damage that has already been done to the whole body. Thiamine included 

Thank you for the articles, I think I will re-read them and gain more insite 

thank you 

[Artil]

2 hours ago, RMJ said:

Doctor: “The only treatment I know is gluten free diet.”

When I think about it, the gluten free diet doesn’t “treat” celiac the way some drugs treat diseases (like an antibiotic killing bacteria).  It just stops the source of the damage. The body then must heal itself.  When there is a lot of damage, that will be difficult and additional help may be needed (extra vitamins, easily absorbed nutrients, etc.)

This is EXACTLY what I’m thinking about. 
there isn’t an actual treatment - it’s just stopping damage 

And then I’m thinking about the daunting task of determining what damage has been caused and then trying to repair it. 
I’m my sons case I think there is significant damage 

I would very much like to be able to go to a center like people with other diseases (there are cancer center, kidney centers for dialysis etc) where there is a deficiency screening or something for needed vitamins, b12 shots, or whatever is needed to make a person well. And also extreme knowledge with gluten. 
there is gluten in EVERYTHING it seems. 
I appreciate the fact that there is evidence of it being an ancient Disease- but even now it seems “fringe” and it shouldn’t be. 
how about an awareness bracelet or color for celiac awareness?? Or round up options at check out for research and development of treatments?? 
I know Artil isn’t the only child to go through literal hell and not be diagnosed. 
thank you all for your comments 

[Camarren]

2 hours ago, Artil said:

This is EXACTLY what I’m thinking about. 
there isn’t an actual treatment - it’s just stopping damage 

And then I’m thinking about the daunting task of determining what damage has been caused and then trying to repair it. 
I’m my sons case I think there is significant damage 

I would very much like to be able to go to a center like people with other diseases (there are cancer center, kidney centers for dialysis etc) where there is a deficiency screening or something for needed vitamins, b12 shots, or whatever is needed to make a person well. And also extreme knowledge with gluten. 
there is gluten in EVERYTHING it seems. 
I appreciate the fact that there is evidence of it being an ancient Disease- but even now it seems “fringe” and it shouldn’t be. 
how about an awareness bracelet or color for celiac awareness?? Or round up options at check out for research and development of treatments?? 
I know Artil isn’t the only child to go through literal hell and not be diagnosed. 
thank you all for your comments 

I’ve been having abdominal pain and constipation for 4 days and I just now realized that all of my symptoms are that of celiac disease 

I tried going to the emergency room and they said it was a gastrointestinal virus but when it got worse I went back and they said the same thing that it should just go away but it didn’t so I did some research and found celiac disease and I’m almost certain I have it but there’s still gluten in my system as my abdomen is still throbbing

is there any way to speed up the process of getting gluten out of my system?

[Camarren]

I’m trying to find answers 

[RebeccaLMoyer]

You are not alone here @Artil! We have all been blamed, shamed, written off/ told we are "hysterical" and our symptoms are "in our heads". Applause and huge HUGS to you for being brave on behalf of your son. It is hard, and you are doing it!!!

[Artil]

I joined this for exactly this. It’s amazing to know there are others with this struggle I applaud all of you and the creator of this site. We all need to hear that we are brave and to keep going. It IS incredibly hard to look in the eyes of “authority” and tell them they are not right, they are missing something important in diagnosis etc. none of us should have to go through this along with either personally being super sick or caring for someone you dearly love who is super sick. 
Celiac Disease should be as legitimate as heart problems. Or cancer. In fact undiagnosed is CAUSES these problems. 
thank you for caring enough. Thank you for the support and the information!! 
love to you all

[RebeccaLMoyer]

@artil The Chicago Celiac Center (at Univ of Chicago hospital) has a Pediatrics division. They may also do teleheath?

[Artil]

1 hour ago, RebeccaLMoyer said:

@artil The Chicago Celiac Center (at Univ of Chicago hospital) has a Pediatrics division. They may also do teleheath?

Thank you!! 
I didn’t know! I’m going to check it out ASAP awesome! 

[trents]

7 hours ago, Camarren said:

I’m trying to find answers 

You need to get tested for celiac disease. The first stage of testing is getting a blood draw sent to a lab to check for celiac antibodies. Keep eating gluten until you get tested or the tests will not be valid.

[Artil]

9 hours ago, Camarren said:

I’m trying to find answers 

Ask for a celiac antibody blood test while you still have gluten in your body. It’s a simple blood test- with those symptoms a good doctor should order the test to either rule it out or start the diagnosis 

 

[Wheatwacked]

On 8/7/2021 at 4:02 AM, Artil said:

I felt very alone in this and was ridiculed, blamed, mom shamed, and overall ignored. 

In 1976 every one told my wife that our 6 month old was just "colicky" and it would pass. She should take valium. She persisted and found the only doctor in Israel that treated this. At the time there were only 12 others in the country being treated for Celiac Disease. He prescribed Nutramigen and after 6 months a Gluten free diet and my son recovered and thrived. He recommended that we also adopt GFD but we did not and I now regret it.

As I remember there was research done in Germany during WWII. The doctor's goal was to save the children from extermination.

Here are the charts I did comparing the ones being discussed. Nutramigen to me is clearly better, but I read somewhere it is being discontinued.

You would think one of the many specialists you saw would have had a clue.

Good job!

Pantothenic acid in the essential care is 7.9 mg not 7900. Their label was in micrograms and I missed it.

https://www.celiac.com/forums/topic/155198-refractory-celiac/page/4/?tab=comments#comment-1088765