24 year old son newly diagnosed with Celiac

[SusanB123]

Hello,

I am jumping in so I can learn how to help my son.  September 2023 he all of a sudden became violently ill.  His appendix was removed and he was sent home.  One week later he was hospitalized with the same violent symptoms and it was suggested we remove the gallbladder as it may have been the culprit but they made it clear that it was just a stab in the dark.  NO ONE in the hospital EVER mentioned gluten or celiac.  All my FB friends were saying that could be the cause but the doctors in the hospital WOULD NOT help him!!!  He felt like he was dying. September-December he spent 13 nights in the hospital and was fed gluten. Finally a doctor diagnosed him with cyclical vomiting but did discover a marker that indicated a gluten sensitivity.  At that point we began a gluten-free diet but did NOT understand cross contamination at that point. Here we are one year later with an official celiac diagnosis not coming until we got established with a GI which took over SIX MONTHS!  It was July 2024 before this official diagnosis. It was a very frightening experience. He still struggles with cross contamination.....I guess because he occasionally gets very sick.  Each time he goes to the ER for fluids.  They are very UNSEMPATHETIC and seem to not understand the pain he experiences.  This last trip to the ER the doctor would not give him any pain meds.  The fluids did help but he was not fully recovered when we left.  My momma heart aches for him and what he is going through.  I live an hour and a half away from him so he has to cook for himself and figure our how to navigate traveling for work and getting out on his own. When I get time off work and can visit I always food prep for him so he has good meals for a week. I am just digging in a bit to this resource and it helps to read the experiences of others.  No one in our family has celiac so we are puzzled why at 24 he is just now having problems.  He was rarely sick his entire life and seemed to be healthy.  He was 201 lbs in 2023 before he got sick. Now it is difficult to maintain 175.  He is 6"1'.  I worry about his nutrition. Thank you for reading! 

[Wheatwacked]

Welcome to the forum @SusanB123,

I sympathize with your plight.

First I will will state that he is not alone.  Here is a post from another forum member: "I was diagnosed celiac January 2023, with no symptoms.  I have been on the gluten free diet since, but since the 6th month of the diet to date, I have developed symptoms-stomach pains, bloating, distended stomach, headacres and I am always hungry despite actually eating more.  The dietitican says I'm doing great, my doctor is pleased, but I'm confused.  Shouldn't I be getting better?"

The dietitian and doctor think this is improvement?!

1960–2002: The average weight of men aged 20–74 increased from 166.3 pounds to 191 pounds.  15% of the population in 1970 were obese, today it is 50%.  The WHO regards an adult BMI of less than 18.5 as underweight.  At 6'1" the acceptable body weight for you son is 140 to 188 pounds.  More important, I think is belly girth.  At 63, when I started GFD I was 6'2" male, 185 pounds with a belly of 42".  I looked like I was 9 months pregnant.  At 20 I was rejected from the Vietnam Draft because I was underweight at 135 pounds.  My heathiest weight was around 160 which I am at now at 73.  Wearing the same size clothes as when I was 25, which is when my newborn son was diagnosed with Celiac Disease when he was weaned in 1976.  Unfortunately we did not listen to his advice that my wife and I should also eat gluten free.  As a result my wife and my own health suffered.  She from lifetime allergys, endometriosis, and passed in 2005 from heart failure from malnutriton after three rounds of chemo for Ovarian Cancer.  I finally came out of denial in 2014 and that ended a lifetime of mouthbreathing, alcoholism, sleep apnea, fibromalgia and 19 other symptoms that improved with GFD alone. I stopped getting worse but like the post I quoted I was not getting better.  That did not make sense.  Eventually I realized that the "healthy foods" I was eating was not supplying the essential nutrients I needed to heal so I was suffering from malnutrition by following the misguided nutrition advice. Your son will find his natural weight eating gluten free and fixing the nutritional deficits caused by malabsorption from Celiac Disease and the deficiencies from the poor nutritional advice given us by the experts since the late 1960's.  Have hope.

Bad advice:

Iodine is bad.  Based on a single study on rats by Wolff-Chaikoff at UC Berkeley around the time that iodine was important to National Security for it's protective effect against radiatition. 

Quote

The Wolff-Chaikoff Effect     These rats never became hypothyroid and thyroid hormones were not measured in their plasma. Nevertheless, the W-C effect, which did not even occur in the rats, was extrapolated to humans.

Vitamin D supplementation is dangerous.  Hypervitamin D toxicity is one of the rarest diseases.  It was a legal reaction to a baby formula manufacturing error in the UK in the early 1950's that caused an epidemic of baby deaths. Mayo Clinic: Vitamin D Is Not as Toxic as Was Once Thought

Eating meat and eggs causes high cholesterol.  This caused a decrease in choline intake which at this point 90% of industrial populations intake is less than the Adequate Intake of 450 mg a day.  One effect of low choline is GALLBLADDER disease.  Choline is needed for fat digestion.  It is a major portion of the biles salts, which keeps bile liquid and flowing through the pancreas and into the intestine where it digests fat.  It is an essential part of acetycholine (nerve transmission) and phosphatidyl choline is a major ingredient in cell and mitochondria membranes.  It donates methyl to detoxifiy Homocysteine.  Folate also donates mythyl and the there are many variations on the genes in charge.  But we only need 400 mcg of folate, compared to 450 mg of choline. Yet in the US gluten processed foods have Folic Acid fortification and Choline is ignored.  As an aside Folic acid supplementation was associated with increased risk of prostate cancer. By contrast, baseline dietary folate was inversely associated with prostate cancer risk.  Folic Acid and Risk of Prostate Cancer: Results From a Randomized Clinical Trial.  Lack of choline in parenteral feedings causes Non Alchoholic Fatty Liver Disease and in Europe they have supplementation for that but in the US no one has gotten FDA approval so despite the knowledge, people on PTN get sicker with liver disease.  

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Essential nature of choline with implications for total parenteral nutrition  Studies in patients receiving long-term TPN have shown that low levels of plasma choline are common and can be associated with hepatic steatosis.

Worldwide, sales of statins are running at about $19 billion a year .  Statins lower cardiac death rate by 3%, Folic Acid raises cardiac death by 17%.

 I was diagnosed at age 21 with benign prostatic hyperplasia (BPH), also known as an enlarged prostate, yeah, the old man disease.  I had prescription for Talwin a synthetic opiod for the pain it caused.  It went away after 3 months of GFD at age 64. My prostate is normal on Digital Rectal Exam but my PSA is high so the prostate doctor (don't see him anymore) wanted to do a biopsy anyway.  There are other reasons for high PSA, which he never even mentioned, much less pursued.  Accuracy is low and the chance of nerve damage from the biopsy is >20% while my chance of dying from prostate cancer in the next 10 years is less than 1%.  He don't care, his job is operating, not curing.  He dismissed my claim that the GFD helped with the comment "every one makes different diet choices"

Most of the 26 vitamin and mineral deficiencies will get better as his gut heals, but without supplementation vitamin D, Iodine, and choline won't because we are advised to ignore them and they are deficient in our recommended healthy diet.

 

 

[trents]

Welcome to the forum, @SusanB123!

Celiac disease has a genetic base but the genes need some stress trigger to be "turned on" to result in active celiac disease. Almost 40% of the population has one or more of the genes that are associated with celiac disease but only about 1% ever develop active celiac disease because the genes aren't turned on. The stress trigger is the mysterious part but it can be an illness, emotional/psychological trauma, environmental toxins, antibiotics or a lot of things. We don't know much about this part. Perhaps your son's appendicitis was the trigger in this instance. The onset of celiac disease can happen at any stage of life.

Gluten can be found in more than just food. It can be found in oral hygiene products, pills and medications, vitamins and supplements. Studies show the biggest threat to the gluten free diet is eating out. You have no control over cross contamination in eatery kitchens. Their gluten free menu items may be cooked right along with gluten containing foods in the same water, on the same grill, sliced and served with the same utensils. I will embed an article that might be helpful to you and your son in avoiding hidden sources of gluten.

But having said that, is he still consuming oats and dairy? Their proteins are similar in structure to gluten and many celiacs "cross react" to these foods like they do gluten. 

 

 

 

[SusanB123]

Thank you! He is avoiding all of the BROW recommended gluten culprits. He does still eat dairy and he knows about FodMap foods that have proteins hard to digest! Thanks for all the great advice! I appreciate all the comments. 

[trents]

What is BROW?

[trents]

One small study I read recently found that half of the celiacs in the study experienced small bowel villous inflammation from CMP (Cow's Milk Protein).