Need answers help and/or advice

[SJBowman]

My 16 year old daughter has had trouble with her stomach for a while now. Another episode brought us to the ER. Once there she had a blood test and her white blood cell count was well over what it was supposed to be. She was admitted to wolfsons children’s hospital. We’ve been here for days and the only thing they can tell us is she has cyclic vomiting syndrome. On a normal day for her she doesn’t eat breakfast or lunch.  Her stomach will not allow her to eat. For fear of vomiting she only eats dinner. Dinner makes her rush to the bathroom every morning at 4 am. The doctors have given her GI meds but nothing is helping. Her father had celiac disease- I’ve read cvs and celiac have very common symptoms. Please help me find a way to get the doctors so they will do the proper testing to make sure she does or doesn’t have celiac disease. 

[knitty kitty]

 

@SJBowman,

Undiagnosed Celiac Disease causes malabsorption of vitamins and minerals.  

Nutritional deficiencies caused by undiagnosed Celiac Disease need to be corrected promptly.

Deficiencies in the eight essential B vitamins, Vitamin C and minerals like zinc and magnesium can cause vomiting.

Thiamine deficiency can cause cyclic vomiting.  Thiamine is Vitamin B 1.  There's eight B vitamins that work all together.  Thiamine stores can be depleted first since it cannot be stored for long.  All the B vitamins should be supplemented together with magnesium and zinc.

High dose Thiamine supplementation is used to stop vomiting.  Deficiency in Niacin Vitamin B 3 can cause vomiting.  Deficiency in B12 Cobalamine can cause cyclic vomiting.   Pyridoxine B 6 is used to stop cyclic vomiting.  

Ask for an Erythrocyte Transketolase test to check her thiamine level.  Or just give Thiamine and B Complex vitamins and look for improvement.    

Keep us posted on your progress!

[trents]

Have you asked any physician to test her for celiac disease? The first stage of diagnosis is a simple blood draw to check for celiac antibodies. Explain to the doctor that there is a history of celiac disease in the family. She must have been eating regular amounts of gluten containing foods in order for the blood tests for celiac disease to be accurate, however. And in this case, that is a question mark as it sounds like she isn't eating much at all.

Has she had an endoscopy and a colonoscopy to check for blockages?

[SJBowman]

@knitty kitty that’s great information I will ask them for that! Thankyou so much for your reply that helps a lot. 

 

 

@trents Thankyou for your reply also this morning I asked for the testing you mentioned. I was able to log on to her chart and see what all they’ve tested her for. I was irate when I saw only std testing and a pregnancy test had been done. The cyclic vomiting can not be tested only observed to be diagnosed so they have already summed it up to that but I’m pushing for more. Though it sounds like it could be up some things don’t align with that condition only. Her white blood cell count was at 25000 she’s had an ongoing UTI but no fevers. Stays nauseous all day. She’s anxious as well for fear of throwing up. Can celiac cause things like utis or high wbc count?? Thankyou both for replying. You have no idea how much you helped just ease my mind a tiny bit. Somebody cares. 

40 minutes ago, knitty kitty said:

 

@SJBowman,

Undiagnosed Celiac Disease causes malabsorption of vitamins and minerals.  

Nutritional deficiencies caused by undiagnosed Celiac Disease need to be corrected promptly.

Deficiencies in the eight essential B vitamins, Vitamin C and minerals like zinc and magnesium can cause vomiting.

Thiamine deficiency can cause cyclic vomiting.  Thiamine is Vitamin B 1.  There's eight B vitamins that work all together.  Thiamine stores can be depleted first since it cannot be stored for long.  All the B vitamins should be supplemented together with magnesium and zinc.

High dose Thiamine supplementation is used to stop vomiting.  Deficiency in Niacin Vitamin B 3 can cause vomiting.  Deficiency in B12 Cobalamine can cause cyclic vomiting.   Pyridoxine B 6 is used to stop cyclic vomiting.  

Ask for an Erythrocyte Transketolase test to check her thiamine level.  Or just give Thiamine and B Complex vitamins and look for improvement.    

Keep us posted on your progress!

This was great!!  Thankyou so much 

[trents]

@SJBowman, if they do an endoscopy on her, push for a biopsy of the small bowel lining to check for the damage caused by celiac disease. They might as well do that while down there. A colonoscopy doesn't go up as far as the small bowel/duodenum where celaic disease manifests itself in the gut.

From experience, the celiac community here knows that celiac disease is generally not on the radar of the medical community and we have to be our own advocates. Appropriate assertiveness and being armed with knowledge are absolute necessities in order to get proper testing done.

Edited February 7, 2024 by trents

[knitty kitty]

Here's some more information on Thiamine.  The form of Thiamine that's especially beneficial for the digestive system is called Benfotiamine.  I take it regularly.

Thiamine and benfotiamine: Focus on their therapeutic potential

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10682628/

 

[Wheatwacked]

15 hours ago, SJBowman said:

Cyclic vomiting syndrome

And the symptom becomes the disease.  All it means is that she throws up regularly and they do not know why.  

Cyclic Vomiting Syndrome (CVS) "Other diagnostic considerations include recurrent pancreatitis, uretero-pelvic junction obstruction, gallbladder disease, hepatitis 

Have they tested her for vitamin D and homocysteine levels and urine iodine levels?

Deficient Choline is common.  Less than 10% eat the minimum recommended amount.  High homocysteine is an indicator of inflammation and can indicate the statis of Choline, Folate, B6, B12 and Taurine.    Since we are urged to avoid eggs and red meat and milk we don't get enough.  Choline is the major salt in bile. Deficiency can cause all sorts of gastro problems often blamed on gall bladder and can cause fatty liver diease.

 

Quote

 

Choline is an essential component of all cell membranes, and has been considered a required dietary nutrient since 1998 by the US Institute of Medicine's Food and Nutrition Board. Choline is necessary for DNA repair, mediated by its role as a methyl donor. It also serves as the precursor for the neurotransmitter acetylcholine. Evidence has accumulated that hepatic steatosis, which occurs during parenteral nutrition therapy, develops as a result of choline deficiency because endogenous production of choline from parenterally infused methionine is deficient. In addition, memory deficits and skeletal muscle abnormalities have been described, and choline deficiency appears to activate cellular apoptosis. Provision of intravenous choline ameliorates hepatic steatosis associated with parenteral nutrition infusion.The Addition of Choline to Parenteral Nutrition

 

Subclinical deficiency in Thiamine (B1) is common in sick people.  But often disregarded as not likely in western countries.

 Rare Presentation of Thiamine Deficiency as Gastrointestinal Syndrome    "The patient was admitted with severe epigastric pain, nausea, and vomiting over the previous week and abdominal pain for the previous 2 weeks... On the 12th day the patient reported numbness and tingling on his chest. He was treated with thiamine... within 24 hours, and the leukocytosis, nausea, and vomiting resolved. The patient stated he felt “the best he had felt in weeks” and was discharged on day 13."

Virtually anyone in hospital has deficient vitamin D.

Increasing your daughters intake of these three nutrients that she should be getting from food and sun,  will help.  They certainly won't hurt.  Medicine cannot fix malnutrition.  

Her choline intake from food should be between 500 mg and 3000 mg a day.  Thats 3 eggs or 12 ounce steak or 10 cups cooked brocolli.