Ready for answers for my son

[britttany5]

I'm so sorry this is such a long story.  This all started in August 2022 my 13 year old son started throwing up every day countless times a day with really violent sounding vomiting and heaving. Other symptoms included diarrhea, stool burdens, horrible stomach pains, headaches, dizziness, eye pain, small rash on eyelid and arm. There were a few days here and there but almost every day for 3 months he threw up and felt horrible. He missed so many days of school and we had to sign him up for home instruction. His celiac panel ttg iga in September was a 6, a weak positive. His c reactive protein and sedimentation rate both came back high. 

Referred to GI and set up egd for mid October. Endoscopy showed mild nodularity in distal esophagus and bulb with moderate erythema and some nodularity. Biopsies were negative for celiac disease and he was put on 30mg of prevacid daily.

His symptoms continued daily until about late November 2022. He then had a window until February were he felt mostly great except for getting strep throat and then covid in Jan 2023. Met with GI in Feb and decided to start weaning prevacid one day on and one day off for 30 days. Within a week, my son would have a whole day of throwing up here and there. Until at the end of February, he had an entire week of sickness and it was decided to restart prevacid daily. 

From this point on until about 2 weeks ago from beginning of March to about mid June his same symptoms as the last 3 month period of sickness from late august to november all came back. He had to restart at home instruction. We went back to the same GI dr in March. He said he thought all of these symptoms were anxiety related and referred to behavioral health. At this point, we just felt so hopeless I asked for additional testing and bloodwork. He did agree to order a gastric emptying study, but said he didn't think it would show anything.

So after many tests and seeing additional GI drs for other opinions, we are here. He had the gastric study, more bloodwork, brain mri, abdominal ultrasound, hida scan, change meds to protonix. He was found to be deficient in vitamin D and his Co q10 levels were low. Retesting of his celiac panel showed an increased ttg iga of 32. His celiac genetic testing showed he does have the DQ2 gene for celiac. His gallbladder scan showed biliary dyskinesia and only functioning and 1%.

Now he is being referred to a surgeon for his gallbladder and he is having a repeat endoscopy in a few weeks to recheck for celiac. It has just been a really long road and i saw studies that celiac disease can affect gallbladder function as well as the use of PPIs, which he has been on since oct 2022.

Im so sorry for such a long post!!! I was just wondering if anyone had this happen and their gallbladder regained function after a celiac diagnosis and a gluten free diet? I am not sure that it is celiac too, but I saw a few articles that said if it is related to celiac disease, that the gallbaldder can possibly regain function once a gluten free diet is started. Thank you so much for listening!

[trents]

Welcome to the forum, brittany5!

What a horrible medical odyssey your son has gone through and how nerve racking it must be as his parent!

First, even if he doesn't have celiac disease, your son could have NCGS (Non Celiac Gluten Sensitivity). They share many of the same symptoms and NCGS is 10x more common than celiac disease. There is no definitive test for NCGS so celiac disease must first be ruled out. And as well, some experts believe that NCGS can be a precursor to celiac disease.

Second, the tTG-IGA test is very sensitive and very specific for celiac disease - 95% or better in both categories. If this one is positive, there is a high probability it is being caused by celiac disease and not something else. Were there other antibody tests run besides the tTG-IGA for celiac disease? When we use the term "celiac panel" we normally mean a battery of tests designed to detect celiac antibodies were run. Here is a link outlining a full celiac panel: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/ . The tTG-IGA is the single most common test run by physicians but it can be really helpful if others are run, especially with pre-adults whose immune systems aren't fully developed. And when we hear of a positive tTG-IGA but negative biopsy for celiac disease we are always concerned that the sampling of the small bowel area was not done thoroughly as the damage to the villi can be patchy. We also see an occasional case where antibody testing is positive and biospy is negative and vice versa. So, when you look at the fact that your son's tTG-IGA is positive and is on the increase, that he has the genetic potential for celiac disease and the fact that he has symptoms of celiac disease, it is beginning to stack up in that direction.

Yes, we do get reports on this forum of gall bladder healing with a gluten free diet.

I also have concern for your son being on long term PPI therapy. That will likely have other health repercussions down the line due to the negative impact on vitamin and mineral absorption that raising the gut pH with meds. Things like osteopenia/osteoporosis. Raising gut pH also increases the chances of developing intestinal infections.

So, my suggestion is that you trial a gluten-free diet with your son and see if his symptoms don't improve. And preferably before someone removes his gallbladder.

 

Edited July 4, 2023 by trents

[britttany5]

30 minutes ago, trents said:

Welcome to the forum, brittany5!

What a horrible medical odyssey your son has gone through and how nerve racking it must be as his parent!

First, even if he doesn't have celiac disease, your son could have NCGS (Non Celiac Gluten Sensitivity). They share many of the same symptoms and NCGS is 10x more common than celiac disease. There is no definitive test for NCGS so celiac disease must first be ruled out. And as well, some experts believe that NCGS can be a precursor to celiac disease.

Second, the tTG-IGA test is very sensitive and very specific for celiac disease - 95% or better in both categories. If this one is positive, there is a high probability it is being caused by celiac disease and not something else. Were there other antibody tests run besides the tTG-IGA for celiac disease? When we use the term "celiac panel" we normally mean a battery of tests designed to detect celiac antibodies were run. Here is a link outlining a full celiac panel: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/ . The tTG-IGA is the single most common test run by physicians but it can be really helpful if others are run, especially with pre-adults whose immune systems aren't fully developed. And when we hear of a positive tTG-IGA but negative biopsy for celiac disease we are always concerned that the sampling of the small bowel area was not done thoroughly as the damage to the villi can be patchy. We also see an occasional case where antibody testing is positive and biospy is negative and vice versa. So, when you look at the fact that your son's tTG-IGA is positive and is on the increase, that he has the genetic potential for celiac disease and the fact that he has symptoms of celiac disease, it is beginning to stack up in that direction.

Yes, we do get reports on this forum of gall bladder healing with a gluten free diet.

I also have concern for your son being on long term PPI therapy. That will likely have other health repercussions down the line due to the negative impact on vitamin and mineral absorption that raising the gut pH with meds. Things like osteopenia/osteoporosis. Raising gut pH also increases the chances of developing intestinal infections.

So, my suggestion is that you trial a gluten-free diet with your son and see if his symptoms don't improve. And preferably before someone removes his gallbladder.

 

I just want to say thank you so so much for your reply!! I appreciate you so much! It has definitely been such a hard journey watching my son go through his and just wanting answers so badly and for him to feel so much better for good. Hoping with all of me that we are almost there! 

I'm so sorry i didn't include his full celiac panel results!

Sept 2022: Endomysial IgA Negative, Ttg-Iga 6 H weak positive, Iga 420 H (Standard range 52-221 mg/dl)

April 2023: Endomysial IgA Negative, Ttg-Iga 32 H Positive, Iga 326 H (Standard range 52-221 mg/dl)

Oh yes thank you so much for the information! I have been so worried about him being on ppi's for this long, and his dr said as soon as he has his endoscopy in a few weeks, we will start weaning him off if she doesn't see any indication of acid reflux. So he will be off of them very very soon hopefully. 

Thank you so much for your help, support, and all of the information. We do meet with a surgeon next week, but I definitely want to go with your suggestion and wait for surgery until we can get him on a gluten free diet and see how he is feeling. I really don't want to make him go through surgery and losing an organ if it can possibly be improved. My son is really hoping that it is not celiac disease or an intolerance because he loves certain foods, but i know there are so many substitutions and yummy things that are naturally gluten free. But we will definitely do anything to get him to feeling all better and be able to go to school and live a normal life. Thank you so much again!!!

[trents]

You are certainly welcome!

I also feel I need to say that it would be advisable to consider some high potency vitamin and mineral supplementation, making sure they are all gluten free, of course.

You say your son is low in D3 and co q10. D3 is a master vitamin that modulates many functions in the body. I would put him on at least 2500 IU daily of D3. Since D3 is a fat soluble vitamin, overdosing can be toxic but we now know that early on precautions from a decade or so ago about overdosing with D3 were overly conservative. Adults can take up to 10,000 IU daily without harm. I would also suggest a good gluten free multi-vitamin. Also, keep in mind that when you withdraw wheat products from his diet and substitute gluten-free facsimile foods you will eliminate a significant source of some vitamins. Mainstream flour products are made with fortified/enriched flour. There is no FDA requirement to do so with gluten-free alternative flours. Gluten-free facsimile foods are typically high in starch/calories and low in nutrients. And it is certainly possible to largely avoid the high cost/low nutritive value of gluten free facsimile foods by focusing on mainstream food products cooked at home like fresh meats, fresh veggies and fresh fruits. The big exception to that is gluten free sliced bread which most of us bite the bullet and buy in the store because it is nearly impossible to make good gluten free bread. The big food companies do a much better job on that one.

Your son will miss the gluten free foods he is used to but in time, gluten-free eating will become the new norm. The transition will also be easier if everyone in the household joins him so that he doesn't feel so excluded.

[Wheatwacked]

On 7/4/2023 at 12:47 PM, britttany5 said:

Now he is being referred to a surgeon for his gallbladder

Before doing any surgery get your son started on gluten free diet with as Tents said lots of vitamins to replenish. Hypervitaminosis vitamin D is one of the rarist, but most often pointed out diseases.  Personally, I've been taking 10,000 IU a day for 8 years and my blood level is steady at 80 ng/ml (equivalent to 200 nmol/L). Normal is 80 ng/ml and the safe range is 30 ng/ml to 120 ng/ml.  Ever notice the winter doldrums? Thats low vitamin D.

Your son has multiple vitamin and mineral deficiencies that need to be replenished.  Medications without fixing the malnutrition first is just a bandaid and bandaids need to be replaced all the time. . Do you have any test results for homocysteine? Over 18 mcmol/L is a good indicator of inflammation and a high possiblility of decificiency of B6, B12, Choline, Folate and or Taurine (an antioxidant amino acid).

Gall bladder surgery is a big step than cannot be undone.  Low vitamin D makes him susceptable to autoimmune diseases, infections, bone density loss.  Choline is an essential vitamin that makes up 80% of mitochondria membranes energy factories phosphatidylcholine, Acetylcholine for nerve transmission, and is a major part of bile so is essential to fat digestion.

Assuming he has diarrhea from the poor fat digestion from lack of choline he likely is also potassium deficient.  The blood level of potassium is strictly controlled because it affects cardiac functions. Most potassium is inside the cells 98% of the intracellular fluid, so the blood test is not indicative of deficiency.

On 7/4/2023 at 12:47 PM, britttany5 said:

i saw studies that celiac disease can affect gallbladder function as well as the use of PPIs

Celiac Disease causes malabsorption which eventually arrives at malnutriton due to damaged villi, but also by avoiding foods like liver, eggs and beefsteak.  Three eggs a day fullfil the minimum daily requirement of choline. A vegitarian diet would need to each 10 cups a day of cooked broccoli.  Only 10% of us eat enough.

      "Choline is the most abundant salt in BILE and helps keep bile healthy. This powerful nutrient has been shown to improve many health conditions, including, ALL neuro-degenerative conditions, liver conditions, cognitive performance, fetal development, even glaucoma."   https://www.panaceanutritionals.com/blog/2018/10/27/choline-the-most-important-nutrient-of-the-body

PPIs lower the acidity of stomach hydorcholiric acid which is needed to sterilize incoming food and break it down to a mash (chyme).  Lower acidity = poorer nutrition.

 

Quote

 

Choline is an ‘essential’ nutrient for humans; and similar to omega-3 fatty acids, as the amount produced endogenously (in the liver) is not sufficient to meet human requirements, it therefore needs to be obtained from dietary and supplement sources. Physiologically, choline is critical for a number of functions across the life cycle which include wide-ranging roles in human metabolism from neurotransmitter synthesis to cell structure and methylation, with choline deficiency being linked to liver disease, offspring cognitive function and potential neurological disorders.

Could we be overlooking a potential choline crisis in the United Kingdom?

 

Signs of BeriBeri vitamin B1 Thiamine deficiency include: 

• Weakness and muscle loss
• Mental confusion
• Tingling or loss of sensitivity in the fingers or feet 
• Fatigue
• Rapid heart beat
• Chest pain
• Nausea or vomiting
• Fever

[britttany5]

Wow thank you both so much for all of the helpful information and tips!!!

I know his vitamin D levels were around 20ng/ml in April of this year. He took 50,000 IU once per week for 8 weeks and then he is now taking 2,000 IU per day of Vitamin D3 and daily 100mg co q10. I also have him taking probiotic gummies. I will definitely start him on a multivitamin too and look into all of those possible other deficiencies too thank you so much for this information!! i truly appreciate both of you and all of your knowledge and help!!

We did meet with the pediatric surgeon this week about his gallbladder and discussed that we were going to see what his egd shows, start him on a gluten free diet after his scope, work on weaning him from the ppi medication, and retest gallbladder function later if needed. She said she thinks the biliary dyskinesia is causing some of his symptoms, but can't say for sure if removing it will help him or if it is the whole problem or just part of the problem. I told her we definitely did not wish to remove it. One of the drs there said something about his case not screaming celiac so I'm just not sure, but hopefully with changing his diet and working on making sure he is getting all of his nutrients and vitamins, he will start feeling so much better for good

Awww yes i plan on going gluten free too to help make it easier for him!! We will do this together thank you for the tips on the bread haha!!

 

[Wheatwacked]

8 hours ago, britttany5 said:

She said she thinks the biliary dyskinesia is causing some of his symptoms, but can't say for sure if removing it will help him

Mainstream medicine believes the only treatment for gallbladder is to remove it.  But: 

Quote

Most people are under the impression that once their gallbladder is taken out, the pain and discomfort they’ve been living with will be gone.  Sadly that’s often not the case.  It is common to have just as much discomfort after the gallbladder is removed. People without a gallbladder are more prone to digestive problems and liver problems; they can even form stones within the ducts of the liver.  The risk of developing a fatty liver is also greater in people without a gallbladder.  What to Do If You Don't Have a Gallbladder?

Recommended Dietary Allowance (RDA): Average daily level of intake sufficient to meet the nutrient requirements of nearly all (97%–98%) healthy individuals;

The RDA for a 13 year old is 375 mg a day. The Tolerable Upper Intake Level is 2000 mg a day. From 14 years and up it is 550 mg a day with UL at 3000 mg/day. Over 19 years old it is 3500 mg.  That means it would require eating 4 to 63 eggs a day; for a vegetarian, 17 to 47 cups of cooked brussel sprouts a day. National Institutes of Health: Choline Fact Sheet for Health Professionals

I don't believe it is possible with out supplementation.  I take (I am 72) 840 mg of phoshatidyl choline a day (equivalent to about 500 mg choline).  

The diet working well for me is Garden salads, and salmon, mahi, ground beef, cooked ham, roast turkey and eggs. M&M Peanuts and 100% grassfed milk is my go to snack.  Fermented foods, (not pickled with vinegar) like dill pickles, Kimchee, saurkraut, miso, olives are good sources for benificial gut bacteria.  You have to read the labels. Unfortunately most of the pickles and such are simply quick pickled with vinegar. Have the flavor but not the nutrition. Profitable for them, not nutritious for us.  Look in the refrigerated section.

Getting started on choline now, even while waiting for test results may help. One final reference article: Lecithin and Choline