Positive family negative me

[SamUK]

Hi all,

First time post long time lurking. Would appreciate some opinions if you don't mind.

 

My father was diagnosed as coeliac 45+ years ago after a long hospital stay and years of misdiagnosis. Huge damage done and now the slightest crumb and he's done for.

My daughter (7) diagnosed via bloods following tummy aches last year TTG IGA ANTIBODY Tissu transglutaminase lgA lev: 45 u/ml (normal range: 0.0 - 6.9). No biopsy needed.

Me (42) tested negative as a 2-3 year old via biopsy and negative last year via bloods. 
Tissu transglutaminase lgA lev: 0.6 u/ml 

Full bloods done and only abnormal was high bilirubin, which they said was likely Gilbert's Syndrome!?

Docs not interested in going further.

 

I get frequent (but not constant) morning stomach aches, bad wind, always floating poo (sorry), very regularly pooping (4-5 times a day). I have not tried a gluten-free diet myself.

 

My questions lay in whether:

1. Could a biopsy now show any difference to when i was a baby? Im imagining yes it could as damage could show now that didn't then.

2. Should I push for a biopsy despite having a negative one as a baby and the neg TTG IgA and antibody (but bearing in mind my father and daughter and both coeliacs)

 

Interested to hear thoughts and experiences (also if anyone else had experienced elevated Bilirubin levels with coeliacs)

Thanks,

Sam

[trents]

Welcome to the forum, Sam!

First, some who actually do have celiac disease don't produce tTG-IGA antibodies. We get this effect not infrequently from forum participants. That's the value of getting a "full celiac panel" done and not just the tTG-IGA. A full celiac panel would include a total IGA count. If total IGA is low then it will suppress the tTG-IGA count down towards negative. This atypical immune response that gives negative tTG-IGA results is also justification for getting a biopsy done. In your case, the biopsy was done in your childhood so I would think it would be a good move to have it done again. Children commonly show unpredictable results, in both bloods and biopsies since their immune system is so immature and because the disease hasn't been at work for long. Not to mention children's body systems are so resilient!

Second, you may have NCGS (Non Celiac Gluten Sensitivity). Shares many of the same symptoms with celiac disease but does not damage the villi or produce antibodies. So, there is currently no test for it. Celiac Disease must first be ruled out. Antidote is the same: total avoidance of gluten.

[SamUK]

Thanks very much for the reply. You explained it perfectly.

You probably won't be too surprised to hear that i asked for all the coeliac tests, which they did for my daughter but only did ttg-iga for me.

I was looking at the tests privately through a local clinic. I have found one not too far away that offers the following (along with follow up appointments):

Endomysial IgA

Recticultin IgA

Gliadin IgA + IgG

Total IgA

Tissue Transglutaminase (IgA)

HLA DQ2/DQ8

 

Does this cover everything needed?

 

 

 

 

 

[trents]

I think that is everything.

[Wheatwacked]

  On 5/13/2022 at 9:17 AM, SamUK said:

Full bloods done and only abnormal was high bilirubin, which they said was likely Gilbert's Syndrome!?

Docs not interested in going further.

Expand Quote  

Gilberts syndrome is a nice way out for the doctor. No cure, no treatment, and even if you are jaudice, yellow eyes, well, no problem.

According to research from 2021, floating stools are a symptom of a malabsorption syndrome. The stool may also be greasy and large and smell foul. By the way, what color is your poo? Gilberts would be clay colored. Given your family history of Coeliac Disease and you have symptoms matching, and the best the doctors can say is We don't know, a gluten free diet is for you. There is no Gilberts treatment but there is for Celiac. GFD and replenish essential vitamins and minerals.

My story is similar. My son was diagnosed right after weaning in 1976 (so about your age). I was 25 and had no gastrointestinal symptoms other than anorexia. His doctor suggested trial GFD. I should have listened. I had many other symptoms,18 by my count of things that improved when I finally started GFD in 2014. My Dad was not well but like me it was put off as "getting older". There are 20 vitamins and minerals that are absorbed in the small intestine. 7 are specifically related to Celiac, the rest just haven't been researched specifically in Celiac. By monitoring and totaling my daily intake I found many that I was not getting enough, even though I ate a "healthy diet". I currently am taking 11 vitamin and mineral pills every day plus a B-Complex.

At the very least go on a trial GFD for at least a month, supplement with D, Choline and Thiamine and then evaluate.

For your poo problem increase your Choline intake. Quickest would be to get a bottle of phosphatidyl choline (thats how it is in food) and take around 2000 mg a day. The upper tolerable limit is set at 3500 mg a day, but the side effects, fishy body odor, low blood pressure are rarely seen at less than 7000 mg a day. Choline is food not medicine. If you are deficient, it is a diet problem not medical. Only 10% of the population of the US, UK and Australia eat the recommended amount.

Test your blood plasma vitamin D (or start now and test later) and raise it to the level of a lifeguard in August, 80 ng/ml. I require 250 mcg (10,000 IU) a day to maintain it, but it took 6 years to get there. Again, vitamin D is nutrition, not medicine. The vitamin D test is one of the only nutritional ones that really indicates status. Before the industrial revolution we all worked all day in the sun.

Take 2000 mg a day of Thiamine (B1). Finish a bottle of it and reevaluate. We should get enough in food, but we don't. There is no upper limit. Brain fog, neuropathies, carbohydrate and lipid metabolism.

Other commonly found deficiencies: potassium, iodine, folate (folic acid is fortified in a wheat flour-based diet), vitamins A and E (food sourced is best).

Why does poop float? Is it normal?

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

Vitamin D Is Not as Toxic as Was Once Thought

Possible Role of Vitamin D in Celiac Disease Onset

Thiamine: The Missing Link to Thyroid Fatigue

 

[Russ H]

  On 5/13/2022 at 5:26 PM, SamUK said:

Thanks very much for the reply. You explained it perfectly.

You probably won't be too surprised to hear that i asked for all the coeliac tests, which they did for my daughter but only did ttg-iga for me.

I was looking at the tests privately through a local clinic. I have found one not too far away that offers the following (along with follow up appointments):

Endomysial IgA

Recticultin IgA

Gliadin IgA + IgG

Total IgA

Tissue Transglutaminase (IgA)

HLA DQ2/DQ8

 

Does this cover everything needed?

 

 

 

 

 

Expand Quote  

Remember you need to be eating gluten every day for 6 weeks prior to the blood test - at least 2 slices of bread or equivalent per day. Also, if your antibodies come up negative but you have HLA DQ2/DQ8, are symptomatic and have several first generation relatives with coeliac disease, that is a good argument to have an endoscopy (on the NHS, so you are not paying extra for it).

Gilbert's Syndrome, just means that you have high bilirubin. Did they do a full liver function test? Liver involvement is quite common with coeliac disease as the liver is rich in tTG2. In fact, it can progress to cirrhosis of the liver.

  On 5/13/2022 at 6:04 PM, Wheatwacked said:

Gilberts syndrome is a nice way out for the doctor.

 

Expand Quote  

Yep.

[Wheatwacked]

How much is enough choline? The RDA minimum is 550 for men. The upper tolerable limit is 3500 mg. That is between 135 to 826 grams of liver a day. Or 4 to 23 large hard boiled eggs. Or 9  to 56 cups of cooked broccoli. For less than $20 you can get a bottle and try it. Or spend much more to test, but still not know.  Same with Thiamine.

Choline’s role in maintaining liver function  "Humans must eat diets containing choline [1] because its metabolite phosphatidylcholine constitutes 40–50% of cellular membranes and 70–95% of phospholipids in lipoproteins, bile and surfactants [2]; it is needed to form acetylcholine, an important neurotransmitter [2]; its metabolite betaine is needed for normal kidney glomerular function, and perhaps for mitochondrial function [2]; and it provides one-carbon units, via oxidation to betaine, to the methionine cycle for methylation reactions [2]."   

  Quote

 

Studies conducted by Alan L. Buchman, MD, associate professor of medicine at The Feinberg School of Medicine at Northwestern University, have shown that fatty liver can be prevented with the addition of the nutrient choline, a component of lecithin.

The connection between liver abnormalities and choline deficiency in humans was first demonstrated in 1993, 

According to Dr. Buchman, there may be other implications for the use of choline beyond patients who are missing their intestines or have intestines that don’t function properly.

“Although we’ve known about choline for a while, we’re just now discovering its importance to verbal and visual memory, nerve conduction, and communication between the cells of the body,” says Dr. Buchman.

 

Expand Quote  

 

 

[knitty kitty]

This is great article from the National Institute of Health explaining different antibody tests for Celiac, genetic testing, and endoscopy.  

https://www.niddk.nih.gov/health-information/professionals/clinical-tools-patient-management/digestive-diseases/celiac-disease-health-care-professionals

 

Do note that there are other genes for Celiac besides the ones discussed in the article.  Not all gene combinations coding for Celiac are known.

Edited May 14, 2022 by knitty kitty
Add more information

[frieze]

You have joined the club, without a doubt 

[SamUK]

Hi everyone,

Thank you so much for your really detailed replies. I am working through it all, a lot to take in there.

It is all really helpful and I really appreciate the time put into them!

 

Thanks everyone

Sam