Untreated celiac

[Sarawiththeceliac]

Hello, everyone I was diagnosed with celiac since the age of 5 but unfortunately I would say I was never been on a strict gluten free diet and looking back to my pictures when I was young,I was shorter than kids my age,I am from Sudan and celiac was not known to people alot and I was living with my grandma until I was 11 , then I moved with my mom which then I believe I started a strict gluten free but unfortunately at that time I already got my period earlier when i didn't even have signs for puberty i looked like a 9 years old at 12 and i have severe periods cramps at my back only that it makes me faint i was never on strict gluten free diet because i have asymptomatic celiac and never believed it would cause something other than cancer and not being able to get pregnant.i am now 17 5'2 and weight 43 kg which this weight never changes I look now like I am 12 compared to my family or friends.i have very hard period pains and I my heaomglobin is 9 I got an IV infusion for iron but I still don't feel well ,I started a strict gluten free diet last month because I now bothered to search about my case .I feel like I am going crazy ,brain fog , fatigue,iron deficiency since I was 13 and unfortunately my family says I am just lazy or i just have an allergy.someone help me what could be the reason and would i improve if i am on a strict gluten free diet or its too late for my hormones weight and height to he fixed i have high prolactin and many other hormones issues .

[Sarawiththeceliac]

2 minutes ago, Sarawiththeceliac said:

Hello, everyone I was diagnosed with celiac since the age of 5 but unfortunately I would say I was never been on a strict gluten free diet and looking back to my pictures when I was young,I was shorter than kids my age,I am from Sudan and celiac was not known to people alot and I was living with my grandma until I was 11 , then I moved with my mom which then I believe I started a strict gluten free but unfortunately at that time I already got my period earlier when i didn't even have signs for puberty i looked like a 9 years old at 12 and i have severe periods cramps at my back only that it makes me faint i was never on strict gluten free diet because i have asymptomatic celiac and never believed it would cause something other than cancer and not being able to get pregnant.i am now 17 5'2 and weight 43 kg which this weight never changes I look now like I am 12 compared to my family or friends.i have very hard period pains and I my heaomglobin is 9 I got an IV infusion for iron but I still don't feel well ,I started a strict gluten free diet last month because I now bothered to search about my case .I feel like I am going crazy ,brain fog , fatigue,iron deficiency since I was 13 and unfortunately my family says I am just lazy or i just have an allergy.someone help me what could be the reason and would i improve if i am on a strict gluten free diet or its too late for my hormones weight and height to he fixed i have high prolactin and many other hormones issues .

Also I got a test for tTg IGA and its 32 

[trents]

Welcome to the forum, @Sarawiththeceliac! Can you give us the reference range for your celiac test? Different labs use different reference ranges for negative vs. positive so without that a test score of 32 is not that helpful. And its that a recent test or was it done when you were 5 years old?

It is imperative that you begin to observe a strict gluten-free diet. If you will do this, you can expect substantial improvement in your health. I can't promise you that you will experience 100% repair of all body damage but you can expect significant improvement overall. You will also need invest in some high potency gluten-free vitamin and mineral supplements. Celiac disease damages the lining of the small bowel. That is the area of the intestinal track where all of the vitamins and minerals contained in what we eat gets absorbed. The damage to this villous lining greatly reduces the efficiency of the absorption.

In the meantime, here is a primer for getting off to a good start on the gluten free diet: 

 

[Sarawiththeceliac]

5 minutes ago, trents said:

Welcome to the forum, @Sarawiththeceliac! Can you give us the reference range for your celiac test? Different labs use different reference ranges for negative vs. positive so without that a test score of 32 is not that helpful. And its that a recent test or was it done when you were 5 years old?

It is imperative that you begin to observe a strict gluten-free diet. If you will do this, you can expect substantial improvement in your health. I can't promise you that you will experience 100% repair of all body damage but you can expect significant improvement overall. You will also need invest in some high potency gluten-free vitamin and mineral supplements. Celiac disease damages the lining of the small bowel. That is the area of the intestinal track where all of the vitamins and minerals contained in what we eat gets absorbed. The damage to this villous lining greatly reduces the efficiency of the absorption.

In the meantime, here is a primer for getting off to a good start on the gluten free diet: 

 

I did a tTG-IgA test to check if they were high I usually do it a lot when I was a kid but the last time I did it was when I was 12 then now at 17 and they were 32 the normal is less than 7 i guess .also I want to know,I do have gluten free supplements but they are not absorbed well due to the inflammation, what do I do should I wait six month after I eat gluten free food or take now even tho I am not sure if they able to be absorbed and I don't see improvements 

[trents]

Can you be specific about what supplements you are taking? The form of a supplement can be critical in how well it is absorbed. Many over the counter vitamin and mineral supplements are optimized for shelf-life rather than absorbability. For instance, take magnesium. On the store shelves you will often see Magnesium oxide or Magnesium citrate. Magnesium glycinate is a much better choice. Same with zinc. Zinc picolinate is a much better choice than zinc oxide. Same with B12, Thiamin, etc. This can be critical when your absorption efficiency is already compromised by celiac disease. You should research best vitamin and mineral formulations for absorbability. 

Routinely, we recommend on this forum the following combination of supplements to counteract nutritional deficiencies from long-term untreated celiac disease: B12 sublingual, B-complex, D3 (5-10k IU daily), magnesium glycinate, zinc picolinate. If you are taking an iron supplement, drink something acidic with it like orange or tomato juice or a vitamin C tablet to increase absorption. 

As the villous lining of your small bowel heals from the gluten-free diet, your absorption efficiency will improve. In the meantime, the only way to combat poor absorption efficiency is to flood the small small bowel with more concentration of vitamins and minerals.

Edited August 24 by trents

[Sarawiththeceliac]

1 hour ago, trents said:

Can you be specific about what supplements you are taking? The form of a supplement can be critical in how well it is absorbed. Many over the counter vitamin and mineral supplements are optimized for shelf-life rather than absorbability. For instance, take magnesium. On the store shelves you will often see Magnesium oxide or Magnesium citrate. Magnesium glycinate is a much better choice. Same with zinc. Zinc picolinate is a much better choice than zinc oxide. Same with B12, Thiamin, etc. This can be critical when your absorption efficiency is already compromised by celiac disease. You should research best vitamin and mineral formulations for absorbability. 

Routinely, we recommend on this forum the following combination of supplements to counteract nutritional deficiencies from long-term untreated celiac disease: B12 sublingual, B-complex, D3 (5-10k IU daily), magnesium glycinate, zinc picolinate. If you are taking an iron supplement, drink something acidic with it like orange or tomato juice or a vitamin C tablet to increase absorption. 

As the villous lining of your small bowel heals from the gluten-free diet, your absorption efficiency will improve. In the meantime, the only way to combat poor absorption efficiency is to flood the small small bowel with more concentration of vitamins and minerals.

But I think consuming vitamins without absorbtion it might make kidney issues I don't want any other problems I try to take vitamins every week or 5 days till I complete 3 months with strict gluten, also how much should I wait for the villi to become normal?

[trents]

Kidney issues? What makes you say that? 

Villi can take up to two or three years to completely heal in mature adults adhering to a strict gluten free diet. Less time for younger people like you. Get antibody levels checked about every 6 months.

Edited August 24 by trents

[Sarawiththeceliac]

26 minutes ago, trents said:

Kidney issues? What makes you say that? 

Villi can take up to two or three years to completely heal in mature adults adhering to a strict gluten free diet. Less time for younger people like you. Get antibody levels checked about every 6 months.

Because since the vitamins are not absorbed due to the inflammation shown by high levels of tTg IGA levels,it will just cause buildup or the kidney will get tired .I already take vitamins and I could see them in my pee the next 4 minutes I don't feel like vitamins are well absorbed I took vitamin b 12 , magnesium and other things and my test results are normal but still not high considering I have been taking them now for almost 3 years .i think there is no point in taking them now since there is a high inflammation I should wait more until maybe I could start to absorb something I already took IV infusion for iron because it by pass the gut due to the poor absorbtion already .

[trents]

It's normal for the pee to turn yellow when taking large doses of B vitamins, particularly riboflavin (B2). That doesn't mean they are building up in the kidneys. It means the excess is being excreted. The B vitamins are water soluble. 

Edited August 24 by trents

[Sarawiththeceliac]

3 minutes ago, trents said:

It's normal for the pee to turn yellow when taking large doses of B vitamins, particularly riboflavin (B2). That doesn't mean they are building up in the kidneys. It means the excess is being excreted. The B vitamins are water soluble. 

I know that but they make my sides hurt , believe me I think I have very poor absorbtion I take iron and it doesn't go up , vitamins and everything else the test results are the same from the last year 

[trents]

Then it sounds like the thing you really need to focus more on is being more consistent with the gluten-free diet. Another suggestion I would make is to avoid using a lot of pre-made gluten-free food. Gluten-free facsimile flours are not enriched like their wheat counterpart and are full of empty calories. Focus on naturally gluten free foods that are nutrient and calorie dense.

Have you had your vitamin D3 levels checked?

[Wheatwacked]

13 hours ago, Sarawiththeceliac said:

i think there is no point in taking them now since there is a high inflammation

The very reason you take supplements is because you absorb poorly due to the villi inflammation.  You need these vitamins to heal and get stronger.  Could you give us a list of what you are taking and quantity?

Iron supplements cause a lot of people discomfort.  Better to get iron and folate from food.  Heme iron sources rom animal products like red meat, poultry, and seafood with raise your iron.

Some blood tests like magnesium, potassium, the body has a homeostasis level that they must be in the nomal range.  So don't worry about the ones in normal range.

As an example from myself.  I started taking 10,000 IU of vitamin D in 2014.  It only took a few weeks until I really felt the benefit.  I was very deficient.  In 2019 my blood level of 25(OH)D was one 47 ng/ml (=117 nmol/L).  Two more years to get to 80ng/ml (=200 nmol/L) the homeostasis level for vitamin D.

13 hours ago, Sarawiththeceliac said:

they make my sides hurt

Whuch ones make your side hurt?  Perhaps there is an alternate.

 

13 hours ago, Sarawiththeceliac said:

it will just cause buildup or the kidney will get tired .

What vitamins are you concerned about?

[Sarawiththeceliac]

53 minutes ago, Wheatwacked said:

The very reason you take supplements is because you absorb poorly due to the villi inflammation.  You need these vitamins to heal and get stronger.  Could you give us a list of what you are taking and quantity?

Iron supplements cause a lot of people discomfort.  Better to get iron and folate from food.  Heme iron sources rom animal products like red meat, poultry, and seafood with raise your iron.

Some blood tests like magnesium, potassium, the body has a homeostasis level that they must be in the nomal range.  So don't worry about the ones in normal range.

As an example from myself.  I started taking 10,000 IU of vitamin D in 2014.  It only took a few weeks until I really felt the benefit.  I was very deficient.  In 2019 my blood level of 25(OH)D was one 47 ng/ml (=117 nmol/L).  Two more years to get to 80ng/ml (=200 nmol/L) the homeostasis level for vitamin D.

Whuch ones make your side hurt?  Perhaps there is an alternate.

 

What vitamins are you concerned about?

I take a vitamin called 21 century it has everything magnesium potassium b12 and it's just a full supplement for the day ,then I have one that my mom brought which are gummies and then I tried centrum ,I also have range of different irons (iron sulphate,iron glyciatnate and others . My problem is that I live with my aunt and due to the circumstances in my home country ( war ) we live all in a small house and they don't cook food that is rich in food and I am not comfortable in cooking for my self like meat or something like that they get mad ,that I ate everything.so I mostly eat what they eat in the day which is just a big meal and then I make small snacks that i could eat I wanted to buy moringa powder or things that I can mix easily and put them in a water bottle.my family don't take things serious about celiac they just believe I am small because I eat rice which doesn't make you get fat as they believe.they also make fun of me when I say I am gonna eat alone due to your contamination I really struggle with them.also I have vitamin D ( it was the most absorbable vitamin for me ) my blood test went from 21 to 34 after i took 50000um I guess every week and that's it .can you recommend me vitamins I can buy from Amazon or anywhere 

[trents]

Thanks for explaining your situation in more detail. You are in a difficult place it seems, not having the control you need over what you eat. What are the possibilities in the foreseeable future of you finding another living situation where you have more control over your diet? You are seventeen so soon you will be an adult. What is in your future? Education? Employment. I can see now that your main impediment to health and healing is not vitamins and supplements but being able to consistently eat gluten free.

[Sarawiththeceliac]

20 minutes ago, trents said:

Thanks for explaining your situation in more detail. You are in a difficult place it seems, not having the control you need over what you eat. What are the possibilities in the foreseeable future of you finding another living situation where you have more control over your diet? You are seventeen so soon you will be an adult. What is in your future? Education? Employment. I can see now that your main impediment to health and healing is not vitamins and supplements but being able to consistently eat gluten free.

Yes my main goal is to  eat a guarantee  gluten free food but unfortunately I am in A very difficult situation I try to never eat gluten even if I am gonna stay hungry.i am living in the UAE with my aunt and her kids , husband and my grandma and uncle big in a small apartment,my mom is in Sudan due to her work so we can afford education here . I am now studying hard so I can get a scholarship somewhere else ,I can't work until I am 18 and basically I have no other income for me as I am still not 18 , so my mom send me an allowance every month and i buy gluten-free protein powders,nuts , dates and things i can hide and eat when I am hungry .I recently got an iron infusion and my blood tests where very bad low urea low creatine and many other deficiencies.my main priority is to stay gluten free for 3 months and then start taking vitamins,( I take oral iron every other day because the IV made my iron in the normal range but not enough I still feel dizziness and fatigue.I just want people to recommend for me things I can eat or vitamins that are easily absorbed when I need them quickly .

[trents]

How many grams of protein per day would you say you are getting and how many calories per day? I did some research on causes for low creatin and low urea.

[Sarawiththeceliac]

2 minutes ago, trents said:

How many grams of protein per day would you say you are getting and how many calories per day? I did some research on causes for low creatin and low urea.

Basically I don't eat lots of protein from so I bought protein powder I Don't know how much but I just make 2 scoops of it and mix it with dates and milk .and I just calculated the things I eat in the day and I am surprised that I get less than 1000 calories 😬.

[trents]

1000 calories per day is not near enough to sustain your body's needs. You should be aiming for twice that much. You are in a borderline starvation mode and even apart from celiac disease that explains a lot of your medical issues. And you should be aiming for 75-100 gm of protein per day. Do you have access to eggs? Protein powders are good for supplementing protein should not become the main source of dietary protein as they lack any supporting necessary nutrients. Eggs are a nearly complete food, being an excellent source of protein, vitamins and healthy fats. 

[Sarawiththeceliac]

2 minutes ago, trents said:

1000 calories per day is not near enough to sustain your body's needs. You should be aiming for twice that much. You are in a borderline starvation mode and even apart from celiac disease that explains a lot of your medical issues. And you should be aiming for 75-100 gm of protein per day. Do you have access to eggs? Protein powders are good for supplementing protein should not become the main source of dietary protein as they lack any supporting necessary nutrients. Eggs are a nearly complete food, being an excellent source of protein, vitamins and healthy fats. 

Yes I have 2 eggs per day and I drink one cup of milk the. There's a big family meals which sometimes there is meat or finish or peans or our traditional foods .and then at night I make gluten free cakes which I eat with my protein shake . can you recommend for me things that I can buy and eat alone when I am hungry .do you think black molasses and spirilulina or moringa powder are good if I add them to my diet?

[trents]

There are about 8 grams of protein in an egg and also in a cup of milk. About 90 calories in an egg and around 100 to 120 calories in a cup of milk, depending on the fat content. To increase your calorie intake with food items that are also nutritionally dense, concentrate on seeds and nuts. They are high in fat content, so lots of calories, but also rich in vitamins and minerals. They are a moderately good source of protein as well. Black molasses is a good source of calories but not such a good source of vitamins and minerals so don't go overboard on it. It is somewhat better than table sugar from a nutritional standpoint, however. Spirilunia and moringa powder I am not familiar with but I doubt there is much calorie value there and it is refined so I doubt that they would be a great source of vitamins.

Edited August 25 by trents

[Wheatwacked]

Bananas are rich in fiber, potassium, magnesium, iron, phosphorus, and zinc and B vitamins.  One of the first successful treatments for Celiac Disease used banana as the main carbohdrate energy source.

quick, easily digestible energy, easier on sensitive stomachs and offer more potassium, which can help replenish electrolytes lost through sweat.”
 

Quote

 

THE VALUE of THE BANANA IN THE TREATMENT  OF CELIAC DISEASE

An overipe banana is not only well tolerated, but rapidly changes the entire picture of the disease to one of well being. The number of bananas offered to a child may be quickly increased by one or two daily until the patient's demand for carbo¬ hydrate is satisfied.

 

I clean and separate the banana from the bunch and store in the refrigerator.  The outside peel may turn color, even black, but the banana inside does not get overripe so they can last a long time.

[trents]

I think in the UAE you may have access to pistachios, cashews and coconut. All would be packed with calory and nutrient dense. Cashews especially, are both high in fat and higher in carbs than most other nuts.