I feel so bad

[Sergey]

Hello. I decided to write that post to see if there is a way out of my situation. I have had stomach problems since childhood: flatulence, diarrhea, constipation. At the age of 7, severe pain appeared and I was diagnosed with celiac disease. Since then I have not eaten pastries and tried to avoid them. In addition, I have a diagnosis of Kriegler nayyar. At the age of 13, I was admitted to the hospital, where they increased the dose with barbital. And one night my whole body went numb, I could barely move. There was also a strong itching in the area of the head and back. This went on for about two years. Everything was attributed to a high level of bilirubin. Perhaps barbital disrupted the absorption of vitamins, because the last time I was found to be deficient in vitamin b12. Over the past year, I have shed a lot of tears and experienced a lot of stress. I was sitting at school with severe cutting pains in my stomach, and the only pills I was prescribed contained lactose (I didn't know then that I was allergic to it). My hands were also shaking and it was very cold, regardless of whether the room was warm or not. Then I ate pizza for six months (gluten-free, with cheese, and ketchup (later I found out that it contains vinegar, which I don't know). But since I often had acne, I refused it. And he began to refuse any food at all, even gluten-free bread with butter. Then I switched to raw fish, ate quite often and a lot, because I couldn't eat enough. Only then did I realize what a mistake I had made. In the winter I became very ill, there was blood in my saliva (I don't know from where, but it sometimes appeared, passed only by the spring of this year). Last year, in the summer, I couldn't eat anything, it was terribly bad. After treatment with helicobacter, it became easier, but acne began to appear again, although I do not eat dairy. The diet includes only oatmeal, meat, and potatoes. I feel very bad from any food, especially from fruits and vegetables, they cause flatulence and the smell of the chair has the smell of hydrogen sulfide or something. Chicory or bitter chocolate makes me sweat a lot. I forgot to tell you, it passed when I calmed down and stopped crying. I also have deceptive leukopenia and duodenitis. I read a little here and found the medicine "Glutamine", it seems to be useful should I take it? And is it worth hoping for the best? I have heard that celiac drugs are being developed. Maybe I should take part in them, though I'm from another country. I just don't know what to do

[Scott Adams]

Welcome to the forum, and I'm sorry to hear of your health issues.

You mention being gluten-free, but it's not clear if you were ever tested for celiac disease, or if you are self-diagnosed and have gluten sensitivity. Knowing whether or not you have celiac disease or non-celiac gluten sensitivity may affect the replies you get here, so please let us know.

Glutamine is gluten-free by itself, but of course any pill could also contain hidden gluten, so be sure it says "gluten-free" on the label. This amino acid may help heal leaky gut issues, and it could be worth a try in your case.

Is your diet 100% gluten-free? If the vinegar in your gluten-free pizza was distilled, it is gluten-free, no matter it's source.

Are you taking multi-vitamins? 

This article is written for those with celiac disease who still have symptoms long after going gluten-free, and it may be helpful to you:

 

[Sergey]

6 minutes ago, Scott Adams said:

Welcome to the forum, and I'm sorry to hear of your health issues.

You mention being gluten-free, but it's not clear if you were ever tested for celiac disease, or if you are self-diagnosed and have gluten sensitivity. Knowing whether or not you have celiac disease or non-celiac gluten sensitivity may affect the replies you get here, so please let us know.

Glutamine is gluten-free by itself, but of course any pill could also contain hidden gluten, so be sure it says "gluten-free" on the label. This amino acid may help heal leaky gut issues, and it could be worth a try in your case.

Is your diet 100% gluten-free? If the vinegar in your gluten-free pizza was distilled, it is gluten-free, no matter it's source.

Are you taking multi-vitamins? 

This article is written for those with celiac disease who still have symptoms long after going gluten-free, and it may be helpful to you:

 

Hello. I don't take multivitamins. The diagnosis of celiac disease was made after a biopsy

[trents]

Have you been checked for SIBO (Small Intestine Bacterial Overgrowth)? The flatulence and it's odor you describe makes me think of that.

[Sergey]

8 minutes ago, trents said:

Have you been checked for SIBO (Small Intestine Bacterial Overgrowth)? The flatulence and it's odor you describe makes me think of that.

No, I have not been tested for this disease

[trents]

SIBO is not uncommon in the celiac population.

[Sergey]

1 hour ago, Scott Adams said:

Welcome to the forum, and I'm sorry to hear of your health issues.

You mention being gluten-free, but it's not clear if you were ever tested for celiac disease, or if you are self-diagnosed and have gluten sensitivity. Knowing whether or not you have celiac disease or non-celiac gluten sensitivity may affect the replies you get here, so please let us know.

Glutamine is gluten-free by itself, but of course any pill could also contain hidden gluten, so be sure it says "gluten-free" on the label. This amino acid may help heal leaky gut issues, and it could be worth a try in your case.

Is your diet 100% gluten-free? If the vinegar in your gluten-free pizza was distilled, it is gluten-free, no matter it's source.

Are you taking multi-vitamins? 

This article is written for those with celiac disease who still have symptoms long after going gluten-free, and it may be helpful to you:

 

Please tell me if L-Glutamine from this manufacturer Solgar Vitamin and Herb USA is suitable?

3 minutes ago, trents said:

SIBO is not uncommon in the celiac population.

Thank you. I'll check it

[trents]

2 minutes ago, Sergey said:

Please tell me if L-Glutamine from this manufacturer Solgar Vitamin and Herb USA is suitable?

Should be. The advertisement on Amazon states it is gluten free.

[Wheatwacked]

"Exposure of skin to sun light is very effective in reducing blood bilirubin levels..." 

Like Seasonal Affective Disorder the treatment of choice seems to be phototherapy which in my opinion is not as effective as simply taking vitamin D.

A Rare Case of Crigler-Najjar Syndrome Type II in a 14-year-old boy with Celiac Disease: "The patient was prescribed 2mg/kg of Phenobarbitol twice daily and vitamin D3...The use of phenobarbital, a barbiturate that lowers blood bilirubin levels, is indicated for Crigler Najjar syndrome type II."

When were you diagnosed and are you being treated now for the CNS type II? Were you diagnosed CNS with genetic tests or just history and symptoms. If you can get tested for vitamin D, B12, B6, folate, homocystein. You should be eating 5 eggs or 400 grams lean beaf a day to get enough choline. Malabsorption from Celiac Disease could be the core issue. If you had Celiac Disease when you were diagnosed with Crigler Naffar (type II?) maybe it was the malnutrition.

If you are using Proton Pump Inhibitors it can allow SIBO to take over. That would be the heliobcter ( H. pylori)

Choline supplementation prevents the effects of bilirubin Crigler Naffar is too much bilirubin. 

8 hours ago, Sergey said:

The diet includes only oatmeal, meat, and potatoes.

You could try eating this for a while till your gut calms down: oranges, bananas, lean beef, turkey, vegetables, eggs, cottage cheese, avoid milk for a while.

Most of your symptoms could be vitamin and mineral deficiencies. In any case as there isn't much to do about the CNS make sure to get enough vitamins and minerals and maintain a strict gluten free diet. If you do you may be suprised.

 

 

[Wheatwacked]

8 hours ago, Sergey said:

Over the past year, I have shed a lot of tears and experienced a lot of stress

By the way the above statement is a sure sign of vitamin D deficiency.  

Quote

 

Vitamin D and Depression: Where is all the Sunshine?  

Persons more at risk for vitamin D include those with malabsorption syndromes such as inflammatory bowel disease, celiac disease, and chronic diarrhea 

 Gloth, Alam, and Hollis (1999) randomized 15 participants with SAD to either 100,000 IU of vitamin D (one time dose) (n = 😎 or phototherapy (n = 7). They reported that depression (assessed with the Hamilton Depression Scale) decreased in persons who received vitamin D (from 10.9 to 6.2, p = .040) as compared to those who received phototherapy (from 12.6 to 11.3, p = ns). There were no untoward side effects from the dose of vitamin D; however, a limitation of the study was the one time dose.

 

 

[Sergey]

8 hours ago, Wheatwacked said:

«Воздействие солнечного света на кожу очень эффективно снижает уровень билирубина в крови…» 

Как и при сезонном аффективном расстройстве, предпочтительным методом лечения является фототерапия, которая, на мой взгляд, не так эффективна, как простой прием витамина D.

Редкий случай синдрома Криглера-Найяра типа II у 14-летнего мальчика с глютеновой болезнью:  «Пациенту прописали 2 мг/кг фенобарбитола два раза в день и витамин D3… Применение фенобарбитала, барбитурата, снижающего кроветворение. уровень билирубина показан при синдроме Криглера-Наджара II типа».

Когда вам поставили диагноз ЦНС II типа и лечат ли вас сейчас? Был ли у вас диагностирован ЦНС с помощью генетических тестов или только история и симптомы. Если вы можете сдать анализы на витамин D, B12, B6, фолиевую кислоту, гомоцистеин. Вы должны съедать 5 яиц или 400 граммов нежирной говядины в день, чтобы получить достаточное количество холина. Нарушение всасывания при глютеновой болезни может быть основной проблемой. Если у вас была глютеновая болезнь, когда вам поставили диагноз Криглер-Наффар (тип II?), возможно, это было недоедание.

Если вы используете ингибиторы протонной помпы, это может позволить СИБР взять верх. Это может быть гелиобктер (H. pylori).

Добавки холина предотвращают эффекты билирубина  . Криглер Наффар слишком много билирубина. 

Вы можете попробовать есть это некоторое время, пока ваш кишечник не успокоится: апельсины, бананы, нежирная говядина, индейка, овощи, яйца, творог, на некоторое время избегайте молока.

Большинство ваших симптомов может быть связано с дефицитом витаминов и минералов. В любом случае, поскольку с ЦНС особо ничего не поделаешь, убедитесь, что вы получаете достаточное количество витаминов и минералов и соблюдаете строгую безглютеновую диету. Если вы это сделаете, вы можете быть удивлены.

 

 

Kriegler Nayyar's diagnosis was confirmed by a genetic test in childhood along with celiac disease. About the sun, I do not know how to be in the sun. I tried to sunbathe for a couple of days, but insects stick to me, which annoys me very much. Vitamin D3 was prescribed to me in the form of fat, and from it I have flatulence. So I gave it up. It may be worth switching to pills, but I doubt that it will be absorbed better. I was also prescribed b vitamins, but I refused them because there was a strong rumbling in my stomach. From food I now eat boiled chicken meat. From any fruits and vegetables, there is a strong rumbling in the stomach, so I almost do not eat them. I've been eating like this for 4 months now. I don't use inhibitors, I don't even know what it is

[trents]

3 hours ago, Sergey said:

Kriegler Nayyar's diagnosis was confirmed by a genetic test in childhood along with celiac disease. About the sun, I do not know how to be in the sun. I tried to sunbathe for a couple of days, but insects stick to me, which annoys me very much. Vitamin D3 was prescribed to me in the form of fat, and from it I have flatulence. So I gave it up. It may be worth switching to pills, but I doubt that it will be absorbed better. I was also prescribed b vitamins, but I refused them because there was a strong rumbling in my stomach. From food I now eat boiled chicken meat. From any fruits and vegetables, there is a strong rumbling in the stomach, so I almost do not eat them. I've been eating like this for 4 months now. I don't use inhibitors, I don't even know what it is

30 minutes of exposure to direct sunlight with only face and arms uncovered should cause your body to product sufficient amounts of vitamin D to meet or exceed the RMDA (Recommended Minimum Daily Amount). The RMDA is probably less than optimum, however.

[Sergey]

2 minutes ago, trents said:

30 минут пребывания под прямыми солнечными лучами с открытыми только лицом и руками должны привести к тому, что ваш организм выработает достаточное количество витамина D, чтобы соответствовать или превышать RMDA (рекомендуемая минимальная дневная доза). Однако RMDA, вероятно, меньше оптимального.

Okay, I'll try

[knitty kitty]

4 hours ago, Sergey said:

Kriegler Nayyar's diagnosis was confirmed by a genetic test in childhood along with celiac disease. About the sun, I do not know how to be in the sun. I tried to sunbathe for a couple of days, but insects stick to me, which annoys me very much. Vitamin D3 was prescribed to me in the form of fat, and from it I have flatulence. So I gave it up. It may be worth switching to pills, but I doubt that it will be absorbed better. I was also prescribed b vitamins, but I refused them because there was a strong rumbling in my stomach. From food I now eat boiled chicken meat. From any fruits and vegetables, there is a strong rumbling in the stomach, so I almost do not eat them. I've been eating like this for 4 months now. I don't use inhibitors, I don't even know what it is

Sergey,

Take your prescribed B vitamins!  They are VITal-AMINes, amino acids that our bodies cannot make.  We must get them from what we consume.  Take them with food to lessen stomach rumblings.  The rumbling will get better with a little time.  

Take extra Vitamin B1 Thiamine in the form thiamine hydrochloride, Allithiamine and Benfotiamine.  Benfotiamine has been shown to promote healing in the small intestine.  Taking extra thiamine will help with digestion and rumbling.  Thiamine also keeps the bugs away from you!!!  

Take your Vitamin D with food, too.  You will raise your Vitamin D level faster with supplements than with sunshine alone.  

Try the Autoimmune Protocol Diet.  It's meat and veggies, but no nightshades (potatoes, tomatoes, eggplant and peppers), no dairy, no grains, no legumes (beans).  The AIP diet promotes healing in the small intestine.  

https://www.thepaleomom.com/start-here/the-autoimmune-protocol/

 

The AIP diet will starve out the bad bacteria in SIBO.  SIBO bacteria ferment carbohydrates resulting in lots of gas, wind, rumbling, etc. 

Heliobacter Pylori is a bacteria found in the stomach that ruins the stomach lining and makes ulcers.  It does not live in the small intestine.  It is not a bacteria involved in SIBO.

Small Intestinal Bacterial Overgrowth (SIBO) occurs when bacteria from the large intestine spread into the small intestine where they aren't supposed to be.  Vitamin B1 Thiamine will help get rid of excess and keep the SIBO under control.  

Please take a good B Complex supplement that contains all eight essential B vitamins.  Take extra Thiamine Hydrochloride, Allithiamine, and Benfotiamine.  Take Magnesium Citrate Glycinate because Thiamine needs magnesium to work properly.  And Vitamin D.

Hope you will feel better soon!

[Wheatwacked]

Vitamin D Status in Russian Children and Adolescents:  "Recently, due to reduction in sunlight, vitamin D deficiency has become very common in both adults and children (10). The problem of vitamin D deficiency is particularly relevant in the entire territory of Russia, since most parts of the country are located above the 42nd geographical latitude, and the residents are thus at risk of vitamin D deficiency (11). However, no research has been conducted about vitamin D deficiency for different regions and different seasons of the year in Russia... In general, a normal blood level of 25(OH)D was observed in 45.5% of cases, insufficiency in 30.1%, deficiency in 19.8%, and severe deficiency in 1.6%.... Taking into account the peculiarities of vitamin D synthesis and the geographical location of most parts of the Russian Federation in the northern hemisphere above the 42nd parallel (30), the majority of children do not have optimal vitamin D levels in winter and spring ...

[Posterboy]

19 hours ago, Wheatwacked said:

If you are using Proton Pump Inhibitors it can allow SIBO to take over. That would be the heliobcter ( H. pylori)

Choline supplementation prevents the effects of bilirubin Crigler Naffar is too much bilirubin. 

Wheatwacked,

I just wanted to say.....good research and thanks for that! You are doing good work as a moderator!

Posterboy,

[Sergey]

On 7/2/2022 at 8:54 AM, knitty kitty said:

https://www.thepaleomom.com/start-here/the-autoimmune-protocol/

I've familiarized myself with AIP and I haven't learned anything useful. I tried adding onions to my diet. In small portions before going to bed, but it got worse. Cucumbers, oranges, and bananas cause rumbling and flatulence with an unpleasant odor. I think it would be better to first take glutamine for a while to reduce intestinal permeability and vitamin D. And then take B vitamins and other vitamins that you wrote about. Tell me, please, what is the best way to plan them for the day?

 

[knitty kitty]

@Sergey

I believe the amino acid L-tryptophan is far more beneficial for intestinal healing.  Tryptophan (along with B6 Pyridoxine and magnesium citrate) help down regulate inflammation and promote healing.

Glutamine, found in meat in the diet and recycled from what glutamine the body already contains, can be made into glutamate in the body.  Glutamate is an excitory neurotransmitter that can cause insomnia, anxiety, irritability, panic attacks, etc.  Glutamate is released during fight or flight responses.  I did not have fun taking glutamine because of the effects of the neurotransmitter glutamate.  

I take Tryptophan, B6 Pyridoxine and magnesium citrate glycinate.  Tryptophan is converted to the "feel good" neurotransmitters serotonin and dopamine.  Tryptophan also helps change the microbiota living in the intestines, favoring bacteria that don't produce inflammation.

Cucumbers and cruciferous vegetables (broccoli, Brussels Sprouts, cauliflower) are known to release gas when digested.  Oranges and bananas stimulate histamine release in Mast Cell Activation Syndrome.  Best to wait on these foods for a bit.  Try berries like blueberries and blackberries.  But not strawberries, they are histamine releasers, too.

Onions and garlic have lots of sulfur and on digestion can release sulfur gases.  Same with eggs.  You might want to wait on these as well.

I took a B Complex supplement twice a day.  The eight B vitamins cannot be stored for long, so we need to replenish them every day.  The B vitamins are water soluble, so any excess is excreted in urine.  There's not a toxicity limit on B vitamins.  

I also take Vitamin B1 Thiamine in the form Benfotiamine which has been proven to help heal the intestines, and Tryptophan, and magnesium citrate glycinate (an easy to absorb form of magnesium less prone to cause diarrhea).  Pyridoxine is in the B Complex. 

Our bodies cannot make any of the B vitamins.  But our bodies can make Glutamine.  

I suggest taking the B vitamins and Vitamin D first and see if there's improvement before trying the Glutamine.  

[Sergey]

18 hours ago, knitty kitty said:

 

Thanks you very much!   This is really valuable information

[LCAnacortes]

Hi there wonderful, super smart people - I am so grateful for this site!

In several posts supplements are recommended but I am not sure which ones, what form and how many mg, mcg or IU to take. Do you have a recommended list?  I am trying to supplement but am not sure if I'm taking enough. Also I remember doctors use to give vitamin B shots - is that a route to pursue?  It seems like taking vitamins and not absorb them is a vicious cycle while healing. I am 2 months on the journey and have figured out several sources where I had cross contamination but I am getting there. I still have symptoms from vitamin deficiencies.  Thank you for your help! 

[trents]

A very important point is to make sure you choose vitamins and supplements that are gluten free. Costco's Nature Made and Kirkland brand of products is very good about stating clearly on the bottle it is gluten free. Here's what I recommend:

• An adult multivitamin such as Centrum or the equivalent daily. I use the Costco Kirkland product.
• A high potency B-complex daily. I use Costco's Kirkland Super B Complex product.
• D3 5000IU daily. I use Costco's Kirkland brand.
• Sublingual B12 of at least 2500 mcg. I use a brand called 21st Century that I get on Amazon.
• Magnesium glycinate or Magnesium citrate. I use the Doctor's Best brand I order from Amazon. I use 100 mg daily. Be careful with magnesium supplements as too much can have a laxative effect. You'll have to experiment with the amount to see what you can tolerate.

Don't worry about overdosing on B-vitamins. They are water soluble and you just pee out the excess.

The list above I have supplied more or less represents what many veteran celiacs on this forum commonly recommend.

The only B vitamin I am aware of that is injected is B12. That is done to correct a particular kind of anemia called "pernicious anemia" which we now know can usually be corrected also by taking very large doses of oral B12, something that was not available decades ago when they were commonly doing injections.

Edited July 4, 2022 by trents

[Wheatwacked]

Vitamins and Minerals July 2021

Name                                         Dose                %RDA           Upper limit

1. B-Complex
2. B-12 (Canocobalamin)    1000 mcg    41,667%    none
3. B-5 (Pantothenic Acid)    1000 mg     20,000%        non
4. D-3 (Colecalciferol          10,000 IU                     600 IU
5. Lithium Orotate              5 mg                     not established
6. Choline (Phosphatidyl)    840 mg        150%         3500 mg
7. C (ascorbic acid)             1000 mg       1112%       2000 mg
8. DHEA                              100 mg            not established
9. Selenium                       200 mcg        364%          400 mcg
10. Calcium (Oyster shell) 1000 mg           76%            2000
11. Iodine Nori 1 sheet        40 mcg          27%            1,100 mcg
12. Magnesium Citrate (1 oz) 290 mg        64%           max supplemental 350 mg
13. Vitamin E, Almonds (2 oz) 15 mg         100%         food source no limit

B-Complex:

• Thiamine Mononitrate 3 mg 250% none
• Riboflavin 2 mg 154% none
• Niacinamide 20 mgNE 125% 35 mgNE
• B-6 (Piridoxine Hcl) 1 mg 59% 100 mg
• B-12 (Cyanocobalamin) 5 mcg 208% none
• Calcium 83mg 6% 2000 mg

Edited July 6, 2022 by Wheatwacked