10 year old with sudden onset, gastroparesis, weight loss, no improvement after 6 weeks on gluten-free diet. AIP? Supplements? Help!

[MominWA]

11 hours ago, trents said:

Has your husband been tested for celiac genes?

No, he hasn't. He will get a Celiac panel when he goes to the doctor next Tuesday.

[MominWA]

11 hours ago, Wheatwacked said:

If you all go gluten free, for your son's sake, then your ambiguous test will be moot.

 

We are going to be gluten free at home. My husband has been trying to do the gluten challenge for the celiac panel, so he's been eating some pre sliced wheat products with our old gluten-y toaster, but otherwise we are all eating gluten free. It would be nice to know if I can eat at work events or while traveling without fear. And to know if I have had 40 years of intestinal damage or not- I don't want to do more damage.

[MominWA]

Update on my son's case- We finally met with a pediatric Celiac specialist and they are not convinced 100% that it is Celiac (sudden onset of severe symptoms, low TTG IGA (4-5, < 3 normal). He wants us to plan to do a gluten challenge, more blood tests and another scope. I'm worried about the challenge but also worried that he might have be misdiagnosed or under diagnosed.  Did anyone experience anything like this with diagnosis? Thoughts? He has had the genetic test done and has one of the genes, which means he has a 1 in 35 chance of Celiac.

[trents]

But your son has show marked improvement since going gluten free along with some other diet and lifestyle changes, correct?

[MominWA]

He had no improvement for almost 8 weeks after starting a gluten free diet (even had to be hospitalized again for weight loss with feeding tube). He improved rapidly around week nine, about a week after I started B1, choline and high vitamin D as suggested on here.

 

I assume if we give him gluten he will likely get sick very quickly again? It's hard to think about giving him something that might make him sick again. I was really not expecting this.

[trents]

Well, if you give him gluten and he suddenly becomes ill again you at least know what to withdraw quickly and hopefully, it would not send him into a health tale spin but something he will bounce back from quickly. I guess I'm thinking you need to try it for clarity sake. Include son in on the decision if possible.

[Wheatwacked]

Thanks for the update. Happy he is getting better.😀

5 hours ago, MominWA said:

He has had the genetic test done and has one of the genes, which means he has a 1 in 35 chance of Celiac.

"duodenal mucosa with intraepithelial lymphocytosis and villous blunting." and "The histologic findings in the duodenal biopsies show a malabsorptive pattern and are compatible with celiac sprue in the
appropriate clinical context. Some villi remain normal, but others are quite shortened"

I don't see the ambiguity.

     My son was diagnosed as an infant in 1973.  Ate only Nutramigen Hypoallergenic Formula for about six months and then weaned to a gluten free diet.  Around five years he was sneaking bread.  With the agreement of pediatrician, and multiple doctor friends, my wife was a nurse, we allowed him to eat gluten which he tolerated. His diagnosing doctor was in another country so out of the picture. In kindergarten we started him on Ritalin for ADD as his doctor predicted we would when he was orinally diagnosed.  At 47 he is suffering from the same symptoms I had starting at age 34.  I made it to 63 before coming out of denial.

My wife had endometriosis, fertility problems, asthma, allergies and finally ovarian cancer, passed in 2005.  Though never diagnosed I am confident she had Celiac Disease.

I was a colicky baby in 1951, when they found the connection between Celiac and gluten.  Mom's comment when my son was born concerning his colicky, bloated belly was "You got what you gave".  At 11 I was started on coffee for ADD.  After starting GFD in 2014 I counted 19 symptoms that improved with  GFD that I had lived with all my life; always being told, " we don't know why but this is normal for some people" or "it is just part of getting old". 

My point is that even if you all test negative now, we don't know what triggers the accute stage. Here is a link to the several hundred symptoms that have been linked to gluten and often treated unsuccessfully without GFD.  The whole world is in denial.

 

[RMJ]

I really wonder what the pediatric GI expects to see, or not see, with a gluten challenge and more testing.  Test results are only useful if meaningful action can be taken.  What if the results were the same - what would the GI say.  What if the antibodies or endoscopy or both were normal - what would the GI say? Not celiac?  Or not a long enough challenge? Sometimes with celiac I think each doctor just wants to do their own endoscopy. 

If your son is now doing well on the gluten free diet plus supplements, there doesn’t seem to be much reason to rush into a gluten challenge and more testing.

[trents]

Wheatwacked makes an excellent point. I had forgotten that the biopsy was positive for your son. It does seem highly probable that he has celiac disease but I wouldn't rule out other medical issues besides that.

[MominWA]

I wanted to post another update, as my son's symptoms returned on the gluten-free diet and I think we may have another diagnosis. He had complete and sudden recovery after 8 weeks gluten-free, was well for 4-5 weeks, then came down with a cold. After 4-5 days of the cold, abdominal pain, fatigue and dizziness returned and he has now been sick again for 7 weeks. The Celiac specialist said it was not celiac causing the pain. We finally got results indicating he likely has SMAS and/or nutcracker syndrome (most likely caused by low weight and rapid height growth). The specialist says he thinks there is a 50/50 chance that he does have Celiac. We will likely do a gluten challenge some time in the distant future after he is well.

[knitty kitty]

@MominWA,

I'm sad to hear about your son having more health problems. 

I'm worried your son isn't going to get better until the nutritional deficiencies are addressed.  

Are you still supplementing vitamins and minerals?  How much thiamine is he getting?

I'm not a doctor, I'm not diagnosing.  I've read articles stating SMAS is caused by the loss of a fat pad between the aorta and that artery.  

Fat pads and fat deposits disappear in Thiamine deficiency progression.  Abdominal pain, fatigue, weight loss and dizziness are symptoms of Thiamine deficiency.

Thiamine deficiency disorders can be precipitated by malabsorption, malnutrition, and illness.  Extra thiamine is needed when we have to fight a cold, virus, have surgery, or experience a sudden physical or emotional trauma.  That cold could have precipitated a Thiamine deficiency.

Thiamine deficiency can affect the production of anti-gluten antibodies in Celiac Disease.  The immune cells cannot make tTg IgA antibodies without sufficient thiamine.  

High doses of Thiamine are required to restore normal body weight and metabolic functions.  Visit Dr. Derrick Lonsdale and Dr. Chandler Marrs' web site "hormones matter" for information about Thiamine Deficiency Disorders.

Keep us posted on your progress!

References:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3222767/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10328168/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8451766/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/

 

Edited November 17, 2023 by knitty kitty
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[Wheatwacked]

 

On 9/27/2023 at 1:56 AM, trents said:

the biopsy was positive for your son

I am so sorry to hear that he has relapsed.  I think knitty kitty is right about the nutrition.

If you want I have a spreadsheet that can calculate nutrition intake from a list of ingredients and quantities eaten through the day.  It would help isolate any specific vitamins and minerals lacking. Best wishes.  I know this time is stressful to you.

  The cold will have added stress to his already low reserves and with villi damage causing malabsorption caused a relapse.  Zinc is an antiviral. If he is not eating enough or absorbing enough (8 to 23 mg a day for him) low zinc might make him more susceptible to infection.  As I remember you mentioned that leading up to the gastroparesis diagnosis he had a period of several colds.

 

6 hours ago, MominWA said:

We finally got results indicating he likely has SMAS and/or nutcracker syndrome

Are they going to do CAT scan or other imaging to differentiate before any invasive procedure?

New medications?

Following the original diagnosis of gastroparesis, are they considering Chronic Intestinal Pseudo-Obstruction as a side effect of that?

Here is a optimistic study on SMA 

Quote

 

Superior mesenteric artery syndrome in severe anorexia nervosa : 

Superior mesenteric artery syndrome presents with nonspecific GI complaints, hindering weight restoration in those with anorexia nervosa. Diagnosis is made with radiologic testing, and treatment requires only weight restoration, negating the need for surgical intervention.

 

Chronic Intestinal Pseudo-Obstruction  ?The main treatment is nutritional support to prevent malnutrition and antibiotics to treat bacterial infections. Disorders that may coexist and worsen symptoms of pseudo-obstruction--such as gastroparesis (delayed stomach emptying), gastroesophageal reflux, or bacterial overgrowth--need to be identified and treated."

[MominWA]

I wanted to update again- My son is still in pain, but has gained weight and all his organs are functioning well. He just had a repeat endoscopy with totally clean biopsies and a normal TTG IGA. We started a formal gluten trial (my son really wanted to, Celiac specialist said ok), and he is showing no response to gluten. I realize he might be a "silent" celiac, but it is looking very possible that he was misdiagnosed. Doctors are still trying to figure out the source of the pain, it could be from SMAS. We are focusing on weight gain and pain treatment. I appreciate how helpful and caring everyone on this forum was as we struggled for help and answers.

[trents]

"The etiology of SMAS is thought to be the loss of the duodenal fat pad, thus changing the angle between the aorta and the superior mesenteric artery. This allows the superior mesenteric artery to rest directly on the small intestine, resulting in obstruction.

The most common conditions predisposing patients to SMAS include orthopedic casting with incapacitation, spinal surgeries, anorexia nervosa and/or severe burns. SMAS has been associated with a variety of disease processes including fungal abscess, gastric bezoar, celiac disease, diabetes, pregnancy, and dialysis catheters." https://www.cancertherapyadvisor.com/home/decision-support-in-medicine/pediatrics/superior-mesenteric-artery-syndrome/

[Wheatwacked]

Thanks for the update.  That is good news.

On 7/24/2023 at 11:14 AM, MominWA said:

The histologic findings in the duodenal biopsies show a malabsorptive pattern and are compatible with celiac sprue in the
appropriate clinical context. Some villi remain normal, but others are quite shortened"

This was not a misdiagnosis.  Children recover quickly once the gluten is out of the picture.  

5 hours ago, trents said:

loss of the duodenal fat pad,

Some things just take more time to heal.

Three questions though for my curiosity:

What is your sons vitamin D now?

How did your husbands Gluten Challenge turn out?

How did your Gluten Challenge turn out?

My thoughts are that even if he passes the gluten challenge, stick to the plan.  Going into adolescence he will cheat and hide his Celiac Disease from friends, because teens don't want to be different.  I got this from my 17 year old nephew, recently diagnosed.  Funny thing is he thought it was normal to have stomach issues until now.