Help with recent test results

[Ellis Aust]

Hi community,

I've been gluten-free for 21 years after gluten-free healed many health battles, I was never tested for celiac disease prior.  I still eat 'may contain' products regularly, and likely often cross contaminate with my kids food, I'm relaxed with that part as I never considered I was coeliac.

My son is recently diagnosed celiac disease, and I've learnt how much damage it can do long term, so it's made me re-evaluate myself.

 

I'm wondering if I should consider myself celiac disease for purpose of foods I eat/buy and eating out. As I won't do a gluten challenge, it would impact my life with 3 little kids and a business to run too much.

 

My thoughts / results - 

/ My son is celiac disease

/ I have the gene

/ I have very low iron

/ My antibody levels are 3, even though I'm strictly gluten-free by ingredient.  (Positive for celiac disease is 5 - so I question how I can have any antibodies if I'm not celiac disease).

/ Constantly elevated liver function tests, I don't drink, not overweight, etc - GP's very confused

/ Elevated uric acid tests

/ I have another AI diseasae - Hasimotos, so a higher chance of celiac disease

 

 

Thank you!

 

[trents]

50 minutes ago, Ellis Aust said:

Hi community,

I've been gluten-free for 21 years after gluten-free healed many health battles, I was never tested for celiac disease prior.  I still eat 'may contain' products regularly, and likely often cross contaminate with my kids food, I'm relaxed with that part as I never considered I was coeliac.

My son is recently diagnosed celiac disease, and I've learnt how much damage it can do long term, so it's made me re-evaluate myself.

 

I'm wondering if I should consider myself celiac disease for purpose of foods I eat/buy and eating out. As I won't do a gluten challenge, it would impact my life with 3 little kids and a business to run too much.

 

My thoughts / results - 

/ My son is celiac disease

/ I have the gene

/ I have very low iron

/ My antibody levels are 3, even though I'm strictly gluten-free by ingredient.  (Positive for celiac disease is 5 - so I question how I can have any antibodies if I'm not celiac disease).

/ Constantly elevated liver function tests, I don't drink, not overweight, etc - GP's very confused

/ Elevated uric acid tests

/ I have another AI diseasae - Hasimotos, so a higher chance of celiac disease

 

 

Thank you!

 

Welcome to the forum, Ellis Aust!

Yes. If I was a betting man I'd put my money on you having celiac disease. Several of the symptoms you describe (low iron, elevated liver enzymes and Hashimotos) are associated with celiac disease rather than NCGS (Non Celiac Gluten Sensitivity). My feeling is that the reason your blood antibody levels are subclinical for celiac is that your gluten exposure is not high enough to generate a positive but your gut has experienced slow but relentless damage over the years. By the way, elevated liver enzymes was the main symptom that led to my celiac dx about 20 years ago. I went to my PCP for seven years with this problem and he had no answer. I finally booked an appointment with a GI doc and he tested me right away for celiac disease. 

[Wheatwacked]

4 hours ago, trents said:

low iron, elevated liver enzymes and Hashimotos

Hi Ellis Aust.  I agree with trents and would double down.

An endoscopy with Celiac biopsies may show how much damage in your small intestine.  Many have said they are negative for blood tests, yet are positive on biopsy. And vice versa.

Vitamin and mineral deficiencies to look for.

     Liver enzymes - insufficient choline intake.  Especially if you are eating a "healthy diet" that limits eggs, liver and beef. 90% in the developed world do not consume even the Adequate Intake (AI) of 550 mg a day. "In adults, the average daily choline intake from foods and beverages is 402 mg in men and 278 mg in women."  Choline Fact Sheet for Health Professionals .  If you combine that will Celiac caused malabsorption it's a slam dunk.

          Cleveland Clinic Choline Supplement "A choline supplement can help ensure your body is getting enough choline. Choline is a vital nutrient that helps your liver and brain function correctly. A choline supplement may help reduce your risk of fatty liver disease. Choline deficiency during pregnancy can cause birth defects, so it’s important for pregnant people to get enough choline."

Hashimoto - low vitamin D lets your immune system run amuck and mistakenly attack.  High enough vitamin D blood levels (around 200 nmol/L) can ameliorate autoimmune genes.

Low iodine can cause both hypo and hyper thyroid.  It is an essential mineral that helps kill off defective cells allowing for faster healing, brain function, muscle tone, 

B12 is essential to manage anemia, but low vitamin D can interfere.

Vitamin B12 and Vitamin D Levels in Patients with Autoimmune Hypothyroidism and Their Correlation with Anti-Thyroid Peroxidase Antibodies

Mitochondria Need Nutrients

Quote

 

Iodine Deficiency  

Your thyroid uses iodine to make thyroid hormones, which control the rate of heartbeats, digestion and other functions.

Without enough iodine, your thyroid gland works harder. It can become swollen or enlarged (goiter). Sometimes the gland can’t make enough thyroid hormones – a condition called hypothyroidism.

 

5 hours ago, Ellis Aust said:

Constantly elevated liver function tests, I don't drink, not overweight, etc - GP's very confused

GPs are not taught the intracacies of nutrition.  For example, if your choline intake is low, causing gallbladder symptoms, they are taught to remove the gallbladder and prescribe replacement therapy as the solution.  Unfortunately it usually does not give the patient relief.  But it is accepted treatment. "The usual treatment for gallstones is surgery to remove the gallbladder. "   NIH: How do health care professionals treat gallstones?

Choline’s role in maintaining liver function: new evidence for epigenetic mechanisms

Setting the cutoff points for positive or negative Celiac Disease is more of a bureaurcratic and statistical decision.

5 hours ago, Ellis Aust said:

Positive for celiac disease is 5 - so I question how I can have any antibodies if I'm not celiac disease

Edited November 10, 2023 by Wheatwacked

[Scott Adams]

If you wanted to get formally diagnosed you'd need to do a gluten challenge, and that info is below. But if you already know that gluten causes you issues, and you have first degree family members with celiac disease and you carry the gene for it, perhaps just get more serious about your gluten-free diet...that info is also below.

This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):

 

To get tested for celiac disease you'd need to do a gluten challenge.

Quote

"...in order to properly diagnose celiac disease based on serology and duodenal histology, doctors need patients to be on gluten-containing diets, even if they are causing symptoms, and this is called a "gluten challenge."

• Eat gluten prior to celiac disease blood tests: The amount and length of time can vary, but is somewhere between 2 slices of wheat bread daily for 6-8 weeks and 1/2 slice of wheat bread or 1 wheat cracker for 12 weeks 12 weeks;
• Eat gluten prior to the endoscopic biopsy procedure: 2 slices of wheat bread daily for at least 2 weeks;

and this recent study recommends 4-6 slices of wheat bread per day:

 

 

[Ellis Aust]

On 11/10/2023 at 2:53 PM, trents said:

Welcome to the forum, Ellis Aust!

Yes. If I was a betting man I'd put my money on you having celiac disease. Several of the symptoms you describe (low iron, elevated liver enzymes and Hashimotos) are associated with celiac disease rather than NCGS (Non Celiac Gluten Sensitivity). My feeling is that the reason your blood antibody levels are subclinical for celiac is that your gluten exposure is not high enough to generate a positive but your gut has experienced slow but relentless damage over the years. By the way, elevated liver enzymes was the main symptom that led to my celiac dx about 20 years ago. I went to my PCP for seven years with this problem and he had no answer. I finally booked an appointment with a GI doc and he tested me right away for celiac disease. 

Hi Trents,

thank you so much for taking the time to comment! It’s so interesting to hear that your liver was the main indicator - I’ve been sent for scans etc, first picked up 10 years ago, and GP’s just scratch their head as to what is causing the elevated LFT’s.

Perhaps I should push my doctor to refer me to a gastroenterologist, I understand that if need to do a gluten challenge to obtain a diagnosis (which I don’t think I can do) but perhaps it wouldn’t hurt if the above information was reviewed 🤷🏼‍♀️
 

thanks again!

[Ellis Aust]

On 11/10/2023 at 7:30 PM, Wheatwacked said:

Hi Ellis Aust.  I agree with trents and would double down.

An endoscopy with Celiac biopsies may show how much damage in your small intestine.  Many have said they are negative for blood tests, yet are positive on biopsy. And vice versa.

Vitamin and mineral deficiencies to look for.

     Liver enzymes - insufficient choline intake.  Especially if you are eating a "healthy diet" that limits eggs, liver and beef. 90% in the developed world do not consume even the Adequate Intake (AI) of 550 mg a day. "In adults, the average daily choline intake from foods and beverages is 402 mg in men and 278 mg in women."  Choline Fact Sheet for Health Professionals .  If you combine that will Celiac caused malabsorption it's a slam dunk.

          Cleveland Clinic Choline Supplement "A choline supplement can help ensure your body is getting enough choline. Choline is a vital nutrient that helps your liver and brain function correctly. A choline supplement may help reduce your risk of fatty liver disease. Choline deficiency during pregnancy can cause birth defects, so it’s important for pregnant people to get enough choline."

Hashimoto - low vitamin D lets your immune system run amuck and mistakenly attack.  High enough vitamin D blood levels (around 200 nmol/L) can ameliorate autoimmune genes.

Low iodine can cause both hypo and hyper thyroid.  It is an essential mineral that helps kill off defective cells allowing for faster healing, brain function, muscle tone, 

B12 is essential to manage anemia, but low vitamin D can interfere.

Vitamin B12 and Vitamin D Levels in Patients with Autoimmune Hypothyroidism and Their Correlation with Anti-Thyroid Peroxidase Antibodies

Mitochondria Need Nutrients

GPs are not taught the intracacies of nutrition.  For example, if your choline intake is low, causing gallbladder symptoms, they are taught to remove the gallbladder and prescribe replacement therapy as the solution.  Unfortunately it usually does not give the patient relief.  But it is accepted treatment. "The usual treatment for gallstones is surgery to remove the gallbladder. "   NIH: How do health care professionals treat gallstones?

Choline’s role in maintaining liver function: new evidence for epigenetic mechanisms

Setting the cutoff points for positive or negative Celiac Disease is more of a bureaurcratic and statistical decision.

Thank you so much for your detailed information, it is much appreciated and very interesting. 

I’m going to take some time to review it and research to understand this more. I do love information/research like this to see what I can implement.

thanks again!! 😊

[Ellis Aust]

12 hours ago, Scott Adams said:

If you wanted to get formally diagnosed you'd need to do a gluten challenge, and that info is below. But if you already know that gluten causes you issues, and you have first degree family members with celiac disease and you carry the gene for it, perhaps just get more serious about your gluten-free diet...that info is also below.

This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):

 

To get tested for celiac disease you'd need to do a gluten challenge.

and this recent study recommends 4-6 slices of wheat bread per day:

 

 

Hi Scott,

thank you - this is very helpful information and I really appreciate the links and information about better implementing a more strict gluten-free diet.

Perhaps best upon reflection to really push for a gastroenterologist referral to discuss this more and see whether it was at all possible and worthwhile to do a challenge.

thanks again for taking the time!

[trents]

My liver enzymes normalized quickly after I implemented the gluten free diet. I'd say within three months. Ellis, it seems to me the big thing you need to take away from all this is your need to get serious about eating gluten free, whether or not you first opt to undergo the gluten challenge and get a biopsy done. By your own admission you are not gluten free at this point, just perhaps eating a lower gluten diet.

[knitty kitty]

According to recent research, updates to the gluten challenge are being implemented.

Recommended intake of gluten should be increased to 10 grams of gluten per day for at least two weeks. Or longer.

While three grams of gluten will begin the immune response, ten grams of gluten is needed to get antibody levels up to where they can be measured in antibody tests and changes can be seen in the small intestine.  

Keep in mind that there are different amounts of gluten in different kinds of bread and gluten containing foods.  Pizza crust and breads that are thick and chewy contain more gluten than things like cake and cookies.  

References:

https://www.beyondceliac.org/celiac-disease/the-gluten-challenge/

And...

Evaluating Responses to Gluten Challenge: A Randomized, Double-Blind, 2-Dose Gluten Challenge Trial

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7878429/?report=reader

 "In our study, limited changes in Vh:celiac disease (villi height vs crypt depth - aka damage to the small intestine)  following 14-day challenge with 3 g of gluten were observed, in accordance with Sarna et al.  While the 3 g dose was sufficient to initiate an immune response, as detected by several biomarkers such as IL-2, the 10 g dose was required for enteropathy within the study time frame. Based on our data, we would suggest that gluten challenge should be conducted over longer durations and/or using doses of gluten of ≥ 3 g/day to ensure sufficient histological change can be induced."
Keep us posted on your progress!