coeliac inheritance and Lingering symptoms

[Jitka]

Hi,

my mother has celiacs but that kind with no symptoms. I was having a lot of troubles functioning day to day for past year or so (at least that's when I started noticing something's wrong). In the end it got so bad, that I was tired immediately when I woke up and my belly was big from bloating. Also my hip joint hurt so bad at this point, that I had to limp. Had painful constipation where I spent an hour and a half on the toilet... I was getting depressed and desperate. So I went gluten free and my body got so much better! The joint pain almost went away during the first day and within a week my energy levels were going back up.

The thing is I still have some problems here and there, but the main thing that worries me is my constipation still didn't go away (it got A LOT better though...). So is it normal for the symptoms to kinda stay until I hit the 6monts mark gluten-free? Or does it mean I'm not celiac? I'm not sure if it's possible for my mother to not have any symptoms but I have a lot of them...

[Wheatwacked]

 

Some of your symptoms are the result of vitamin deficiency caused by 

1. Celiac Disease autoimmune caused small intestine villi damage malabsorption syndrome
2. deficiencies in diet
3. deficiency caused by food avoidances

I assume you mean that your mother has no gastrointestinal symptoms but there are over 200 not gastrointestinal symptoms that mimic other diseases and are often misdiagnosed.  

 

Additional likely deficiencies and what I take to boost my intake (I get anorexic at the drop of a hat so I take them to keep me stable):  the ones that helped me the most noticibly are vitamin D, Thiamine, Choline, and Iodine. 

• 10,000 IU vitamin D to control autoimmune, improve mood, especially the winter doldrums (Seasonal Affective Disorder), bone and dental health.
• 500 mg Thiamine - neurologic symptoms, carbohydrate metabolism, subclinical beri-beri.
• Choline – Adequate intake 500 to 3000 mg - essential for fat digestion, gall bladder, liver, brain fog, cell membranes, prevent congenital birth defects.   Could we be overlooking a potential choline crisis in the United Kingdom?
• Iodine – United States RDA 150 mcg to 1100 microgram (mcg) In Japan RDA 150 to 3000 mcg. speeds up healing, muscle tone, brain fog, hair and skin, thyroid. 10 drops of Strong Iodine has 500 micrograms of elemental Iodine. Nori and Kelp. For some people with Dermetitis Herpetiformus, iodine can exasperate the rash. I am currently taking between 600 mcg and 1200 mcg daily with great results. 
• Iodine for Hormonal Health "Your ovaries also need iodine and without enough their structure changes. Iodine-deficient women can produce ovarian cysts and are at risk of developing PCOS."
• Vitamin B2 helps break down proteins, fats, and carbohydrates. It plays a vital role in maintaining the body's energy supply. 
• 500 mg Nicotinic Acid - increase capillary blood flow, lower cholesterol.  Niacin Fact Sheet for Health Professionals
• 500 mg Pantothenic Acid - creates energy from glucose Krebs Cycle
• 1000 mcg B12 - creates hemoglobin for oxygen transport
• 500 mg Taurine - essential amino acid, a powerful antioxident that we make indogenously, but not enough when sickness increases inflammation. reduces Reactive Oxygen Species (ROS are are free radicals.).
• I've been using Zinc Glyconate (Cold-Eeze) since 2004 anytime I feel an itchy throat or other sign of air borne virus coming on.  I haven't had cold or flue, including Covid 19, since.
• Naturally fermented dill pickles reestablished lactobacillus in my gut and reversed my recently acquired lactose intolerance.  100% grass fed dairy is less inflammatory. Milk is a good source of iodine.
• Omega-3 and Omega-6 Fatty Acids in Vegetables  Eating more of the vegetables low in omega six and high omega 3 can reduce inflammation while increasing vitamin and mineral intake..  The target omega 6:3 ratio is less than 3:1.  The typical western diet is from 14:1 to 20:1 because of our food choices.

CHOLINE - THE MOST IMPORTANT NUTRIENT OF THE BODY

Vitamin D Is Not as Toxic as Was Once Thought

Possible Role of Vitamin D in Celiac Disease Onset

Surge of information on benefits of vitamin D 

Quote

"A lifeguard study that found vitamin D levels in the 70 ng/mL range up to 100 ng/mL (nature’s level) were associated with no adverse effects;
Data in patients with breast cancer showing a reduction in the incidence of new cancer with postulated 0 point at 80 ng/mL;
Colon cancer data showing a reduction in the incidence of new cancer (linear) with postulated 0 point at 75 ng/mL;
More than 200 polymorphisms of the vitamin D receptor requiring higher D levels to attain same desired outcomes;
When a patient misses dosing, an attained level of 80 ng/mL gives the patient an additional month of good levels off of vitamin D.

 

[trents]

Your mother is what we call a "silent" celiac. Undiagnosed silent celiacs, and those who are diagnosed but who chose to ignore the need to eat gluten free, can go for years without symptoms until the damage to the villous lining of the gut gets so bad that their health begins to suddenly crash. But, has your mother and for that matter, have you actually been officially diagnosed with celiac disease or are you making assumptions?

Increasing fiber intake, liquids and supplementing with magnesium glycinate can help with constipation. Most celiacs who went years without being diagnosed will have developed significant vitamin and mineral deficiencies because of the damage done the villous lining of the small bowel. On this forum, we routinely recommend taking a high potency B-complex, 5-10k of D3, B12, Magnesium Citrate or Magnesium Glycinate and zinc. All vitamins and minerals must be gluten free.

[Jitka]

On 1/22/2024 at 5:59 PM, trents said:

Your mother is what we call a "silent" celiac. Undiagnosed silent celiacs, and those who are diagnosed but who chose to ignore the need to eat gluten free, can go for years without symptoms until the damage to the villous lining of the gut gets so bad that their health begins to suddenly crash. But, has your mother and for that matter, have you actually been officially diagnosed with celiac disease or are you making assumptions?

Increasing fiber intake, liquids and supplementing with magnesium glycinate can help with constipation. Most celiacs who went years without being diagnosed will have developed significant vitamin and mineral deficiencies because of the damage done the villous lining of the small bowel. On this forum, we routinely recommend taking a high potency B-complex, 5-10k of D3, B12, Magnesium Citrate or Magnesium Glycinate and zinc. All vitamins and minerals must be gluten free.

Thank you for your reply. My mother has the official diagnosis, I don't. I have an appointment with allergology specialist, but it's gonna be another few months until I know more about my condition, so I wanted to learn more on my own to ease my mind... I'm almost certain that I have celiac, but there are still some things that make me question it.

I eat a lot of fiber and drink a lot of water. My doctor recommended these things immediately, but I was already doing it. Then she told me to stop eating bananas and eat prunes, I was doing everything and still nothing. Also gave me psyllium husk, that made it almost worse and then she gave me laxatives, which I didn't take, because I had enough... I stopped eating gluten and that helped a lot, the constipation is better, just not all good yet, so thats kinda weird to me.

Thank you for the recommendations!

On 1/22/2024 at 4:45 PM, Wheatwacked said:

 

Some of your symptoms are the result of vitamin deficiency caused by 

1. Celiac Disease autoimmune caused small intestine villi damage malabsorption syndrome
2. deficiencies in diet
3. deficiency caused by food avoidances

I assume you mean that your mother has no gastrointestinal symptoms but there are over 200 not gastrointestinal symptoms that mimic other diseases and are often misdiagnosed.  

 

Additional likely deficiencies and what I take to boost my intake (I get anorexic at the drop of a hat so I take them to keep me stable):  the ones that helped me the most noticibly are vitamin D, Thiamine, Choline, and Iodine. 

• 10,000 IU vitamin D to control autoimmune, improve mood, especially the winter doldrums (Seasonal Affective Disorder), bone and dental health.
• 500 mg Thiamine - neurologic symptoms, carbohydrate metabolism, subclinical beri-beri.
• Choline – Adequate intake 500 to 3000 mg - essential for fat digestion, gall bladder, liver, brain fog, cell membranes, prevent congenital birth defects.   Could we be overlooking a potential choline crisis in the United Kingdom?
• Iodine – United States RDA 150 mcg to 1100 microgram (mcg) In Japan RDA 150 to 3000 mcg. speeds up healing, muscle tone, brain fog, hair and skin, thyroid. 10 drops of Strong Iodine has 500 micrograms of elemental Iodine. Nori and Kelp. For some people with Dermetitis Herpetiformus, iodine can exasperate the rash. I am currently taking between 600 mcg and 1200 mcg daily with great results. 
• Iodine for Hormonal Health "Your ovaries also need iodine and without enough their structure changes. Iodine-deficient women can produce ovarian cysts and are at risk of developing PCOS."
• Vitamin B2 helps break down proteins, fats, and carbohydrates. It plays a vital role in maintaining the body's energy supply. 
• 500 mg Nicotinic Acid - increase capillary blood flow, lower cholesterol.  Niacin Fact Sheet for Health Professionals
• 500 mg Pantothenic Acid - creates energy from glucose Krebs Cycle
• 1000 mcg B12 - creates hemoglobin for oxygen transport
• 500 mg Taurine - essential amino acid, a powerful antioxident that we make indogenously, but not enough when sickness increases inflammation. reduces Reactive Oxygen Species (ROS are are free radicals.).
• I've been using Zinc Glyconate (Cold-Eeze) since 2004 anytime I feel an itchy throat or other sign of air borne virus coming on.  I haven't had cold or flue, including Covid 19, since.
• Naturally fermented dill pickles reestablished lactobacillus in my gut and reversed my recently acquired lactose intolerance.  100% grass fed dairy is less inflammatory. Milk is a good source of iodine.
• Omega-3 and Omega-6 Fatty Acids in Vegetables  Eating more of the vegetables low in omega six and high omega 3 can reduce inflammation while increasing vitamin and mineral intake..  The target omega 6:3 ratio is less than 3:1.  The typical western diet is from 14:1 to 20:1 because of our food choices.

CHOLINE - THE MOST IMPORTANT NUTRIENT OF THE BODY

Vitamin D Is Not as Toxic as Was Once Thought

Possible Role of Vitamin D in Celiac Disease Onset

Surge of information on benefits of vitamin D 

 

Wow, thank you for such detailed answer! I'll look into those topics you recommended

[Wheatwacked]

Try magnesium citrate.  Comes in 10 ounce bottles flavored cherry, grape, citrus.  Each ounce has 580 mg of magnesium so in a glass of water it covers the RDA for magnesium.  The whole bottle is used as prep for procedures so is good for constipation.  I always forget to put it in my list but I drink 1 oz. cherry magcit and 1 oz tart cherry juice in 16 oz water at least once a day.  Good for hydration, too.

Inulin instead of psillium for fiber.  Inulin is a probiotic and repopulating your gut with happy bacteria is important to your recovery.  Inulin vs Psyllium: Which Is Better for Gut Health?

You might want to start gluten free since it'll be a while for the doctor to see you.  As long as you are eating gluten, if you have Celiac, you will not heal.  Then before the appointment start a Gluten Challenge.  The GFD trial will give you more information for the doctors.  A diagnosis is important, but so is not needlessly suffering while you wait for doctors.

 

[trents]

Jitka, why are you seeing an allergy specialist about a celiac diagnosis. Celiac disease is not an allergy. It is an autoimmune disorder. Completely different immune system pathways.