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Symptoms, possible celiac


DK1984

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trents Grand Master
19 minutes ago, DK1984 said:

Allright.

but i have to eat gluten the next 2-3 weeks because of my upcoming biopsy so i have to wait with a Low histamine and no gluten diet until after the biopsy and Then i Will try that out.

thanks so much for helping me🙏🙏🙏

Understood.

  • 4 weeks later...

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DK1984 Apprentice
On 10/12/2022 at 5:35 PM, trents said:

Understood.

So i Got my biopsy result and i do NOT have celiac according to the gut doctor.

she said she suspect IBS but i dont Think that is it.

for example:

today i woke up feeling ok. I ate breakfast at 10:00 and i had, 1 banana, 4 homemade cookies made of (peanut butter, glutenfree flour, 1 eg, 1 tablespoon honey) and water and coffee. After that i still felt ok.

at 13:00 i had lunch and had: 100 grams of white Rice, 1 can of tuna, 1 tablespoon og olive oil. And water and coffee. Still feeling ok.

at 15:00 i had an energy drink (not a diet)

so at around 16:00 i started getting problems. Right side of nose started to be congested. Light presure in the head, light pain in the Right side of neck, and tiredness.

maybe i have an intolerence? Question is, was it something i ate the Day before? Was it something i ate at the breakfast, and the stuff just has an delayed allergi symptoms or was it the energy drink, or maybe it was just nothing i ate, and it would have been the same why if Nihad not eaten or drinked anything 🤷‍♂️

 

knitty kitty Grand Master

@DK1984,

Hi!  Did you have your deviated septum fixed?  

I'm still of the opinion you are not getting enough protein and thiamine in your diet. 

You are having lots of carbohydrates for breakfast and no protein.  Peanuts and coffee contain thiaminase that destroy Thiamine.  

Heavy on carbohydrates and fats at lunch.  Canned tuna is protein, but canned foods are not good sources of thiamine.  The canning process destroys thiamine.  Fresh meats are best.  

More carbohydrates in the energy drink.  

You can have Thiamine deficiency without Celiac Disease.  If we eat lots of carbohydrates and not enough thiamine, our system gets depleted and our bodies start having problems.  This can include having sinus problems! 

Here's Dr. Lonsdale's explanation...

https://www.hormonesmatter.com/nasal-cycle-sinusitis-allergies-something-else/

And high carbohydrate diet....

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/

Hope this helps!

DK1984 Apprentice
32 minutes ago, knitty kitty said:

@DK1984,

Hi!  Did you have your deviated septum fixed?  

I'm still of the opinion you are not getting enough protein and thiamine in your diet. 

You are having lots of carbohydrates for breakfast and no protein.  Peanuts and coffee contain thiaminase that destroy Thiamine.  

Heavy on carbohydrates and fats at lunch.  Canned tuna is protein, but canned foods are not good sources of thiamine.  The canning process destroys thiamine.  Fresh meats are best.  

More carbohydrates in the energy drink.  

You can have Thiamine deficiency without Celiac Disease.  If we eat lots of carbohydrates and not enough thiamine, our system gets depleted and our bodies start having problems.  This can include having sinus problems! 

Here's Dr. Lonsdale's explanation...

https://www.hormonesmatter.com/nasal-cycle-sinusitis-allergies-something-else/

And high carbohydrate diet....

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/

Hope this helps!

Hello knitty. Thx for answering.


Yes i had my septum fixed 4 weeks back. I allmost Healed up on that part. After 2 weeks both my nostrils was really open up an alot of Air passage in both nose. But This last week my Right side has started to block a bit.

 

regarding thiamin, is that the same as B12? I just had a test for B12 2 days back and it was perfectly normal.

im having difficult finding out what i should eat. Im pretty tall and skinny so i Also need som food that contain calories because i cannot afford to looks weight. I usually weight around 80 kg and im 192cm. But i am Down at around 76 now even though i eat a normal good amount of food Daily. I Think all these checks at the hospital where i had to faste. Had me drop weight. Or maybe This eating gluten and not eating gluten is the Reason. 🤷‍♂️
 

so what would good Daily diet be, with enough calories, if i should get thiamine that you talk about, but avoid gluten, diary, Rice, sugar.?

knitty kitty Grand Master

Here's some interesting articles....

https://www.hormonesmatter.com/nasal-cycle-sinusitis-allergies-something-else/

And...

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/

Follow the Autoimmune Protocol Diet.  

https://www.healthline.com/nutrition/aip-diet-autoimmune-protocol-diet

Thiamine is Vitamin B 1. Cobalamine is Vitamin B12.  There are eight different vitamins in this group of B vitamins.  Blood tests are not an accurate measurement because these vitamins work inside the cells.  Blood tests don't reflect a deficiency inside the cells of the tissues of the body.  We need all eight because they all work together.  

You can have a thiamine deficiency without Celiac Disease.  If you eat a diet of high carbohydrate foods, you need more thiamine.  The more carbohydrates you eat, the more  you need higher levels of Thiamine.  

The AIP diet consists of Meat, veggies, some fruits.  No GRAINS, no dairy, no beans (legumes), no nightshades, no processed foods.  

Hope this helps.

DK1984 Apprentice
12 hours ago, knitty kitty said:

Here's some interesting articles....

https://www.hormonesmatter.com/nasal-cycle-sinusitis-allergies-something-else/

And...

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/

Follow the Autoimmune Protocol Diet.  

https://www.healthline.com/nutrition/aip-diet-autoimmune-protocol-diet

Thiamine is Vitamin B 1. Cobalamine is Vitamin B12.  There are eight different vitamins in this group of B vitamins.  Blood tests are not an accurate measurement because these vitamins work inside the cells.  Blood tests don't reflect a deficiency inside the cells of the tissues of the body.  We need all eight because they all work together.  

You can have a thiamine deficiency without Celiac Disease.  If you eat a diet of high carbohydrate foods, you need more thiamine.  The more carbohydrates you eat, the more  you need higher levels of Thiamine.  

The AIP diet consists of Meat, veggies, some fruits.  No GRAINS, no dairy, no beans (legumes), no nightshades, no processed foods.  

Hope this helps.

So if i eat viramin b1 pills i could still eat High on carbs?

issue is that im getting all sort of recommendation and i am really unsure what i should follow.

some people say that food with High histamine like advocado should be avoided

doc that said she suspect i had IBS said avoid Meat from animals that has 4 legs, so she meant avoid beef and pork.

and you telling me to have alot of Meat with the AIP diet.

and on top of that im loosing weight because i dont know what i should eat anymore because im afraid everytime i put something in my mouth. Im thinking, “does it have High in histamine” “does it contain wheat/gluten” “does it contain diary” “does it have to much sugar” “and now does it have to High on carbs”

Im really lost on what to do and eat.

 

knitty kitty Grand Master

Ask your doctor to refer you to a nutritionist.  

Here's a  high histamine diet explanation...

https://www.healthline.com/health/low-histamine-diet

If you are losing weight, fats are not going to give you the protein you need to maintain and rebuild muscle.  

It's your choice which type of protein you want to eat.  Smoked meats, sausages, processed meats, canned fish, fermented foods, like yogurt and sauerkraut and even wines, are high histamine.  Avocado, tomatoes, eggs, bananas, strawberry are all high histamine.  There's still lots left to eat if you avoid all these.  

You want a balance between carbohydrates and proteins.  Eating a diet made mostly of carbohydrates and little protein  is not going to prevent the weight loss.  Even if you do eat B1 pills, carbohydrates don't contain the proteins needed to make more muscle.  Carbohydrates contain energy that your body uses as fuel.  Without enough thiamine, carbohydrates are stored as fat.  Then without enough protein, the body burns that fat plus the muscles.  

This book has been very helpful to me...

https://www.amazon.com/Paleo-Approach-Reverse-Autoimmune-Disease/dp/1936608391

Hope this helps!


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      And I agree with Wheatwacked. When a physician tells you that you can't have celiac disease because you're not losing weight, you can be certain that doctor is operating on a dated understanding of celiac disease. I assume you are in the UK by the way you spelled "coeliac". So, I'm not sure what your options are when it comes to healthcare, but I might suggest you look for another physician who is more up to date in this area and is willing to work with you to get an accurate diagnosis. If, in fact, you do not have celiac disease but you know that gluten causes you problems, you might have NCGS (Non Celiac Gluten Sensitivity). There is no test available yet for NCGS. Celiac must first be ruled out. Celiac disease is an autoimmune disorder that damages the lining of the small bowel. NCGS we is not autoimmune and we know less about it's true nature. But we do know it is considerably more common than celiac disease.
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      @Mark Conway, here is an article outlining the various tests that can be used to diagnose celiac disease. By far, the most popular one ordered by physicians is the tTG-IGA. But almost all of these tests are known by different names so the terminology will vary from place to place and lab to lab. The article gives common variant names for each test.  In addition to IGA tests there are IGG tests which are particularly useful in the case of IGA deficiency.  
    • JudyLou
      Thank you so much @knitty kitty! My feet aren’t dry or ashy and I don’t have a rash that gets scaly. It’s like very itchy/burning vesicles that are symmetrical - on both arms, both legs, etc. They actually feel better in direct sunlight as long as it isn’t really hot or I’m not exercising outside, but gets worse if I sweat (especially if the area is covered up). It’s not usually on the outside of my elbows and knees which seems more typical of dermatitis herpetiformis (unless it spreads there). It tends to first hit the inside of those areas. Interestingly, twice the rash broke out soon after eating an unhealthy meal and having an alcoholic drink (I only drink a few times a year, no more alcohol content than a glass of wine).  So I wonder if there is a connection. I’m halfway considering doing a gluten challenge for a few months to see what happens, knowing I can stop if I have any symptoms, and asking for a full celiac disease panel at the end. I really appreciate your thoughts! 
    • knitty kitty
      Welcome, @JudyLou, Your rash sounds very similar to the one I experienced.  Mine was due to a deficiency in Niacin B3, although I had deficiencies in other nutrients as well.  Celiac disease causes malabsorption of all the essential nutrients, but eating a poor diet, taking certain medications, or drinking alcohol can result in deficiency diseases outside of Celiac, too.  Symptoms can wax and wane depending on dietary intake.  I knew an alcoholic who had the "boots" of Pellagra, which would get worse when he was drinking more heavily, and improve when he was drinking less.   Niacin deficiency is called Pellagra.  Symptoms consist of dermatitis, diarrhea, dementia, and death (the four D's).  A scaly rash on the feet and hands and arms are called the "boots" and "gloves" of Pellagra.  Darkened skin around the neck exposed to the sun is Casal's necklace.  Poor farmers with niacin deficient diets were called "red necks" because of this.    Does your rash get worse if you're in the sun?  Mine did.  Any skin exposed to the sun got blistered and scaly.  Arms, legs, neck, head.  Do you have dry, ashy skin on your feet?  The itchiness was not only from the rash, but neuropathy.   My doctors were clueless.  They didn't put all my symptoms together into the three D's.  But I did.  I'd learned about Pellagra at university.  But there weren't supposed to be deficiency diseases anymore in the developed world.  Doubtful it could be that simple, I started supplementing with Niacin and other essential nutrients.  I got better.   One of Niacinamide functions is to help stop mast cells from releasing histamine.  Your allergist gave you doxepin, an antihistamine which stops mast cells from releasing histamine.   Since you do have a Celiac gene, staying on the gluten free diet can prevent Celiac disease from being triggered again.   Interesting Reading: These case studies have pictures... Pellgra revisited.  https://pmc.ncbi.nlm.nih.gov/articles/PMC4228662/ Steroid-Resistant Rash With Neuropsychiatric Deterioration and Weight Loss: A Modern-Day Case of Pellagra https://pmc.ncbi.nlm.nih.gov/articles/PMC12532421/#:~:text=Figure 2.,(right panel) upper limbs.&text=The distribution of the rash,patient's substantial response to treatment.   Cutaneous signs of nutritional disorders https://pmc.ncbi.nlm.nih.gov/articles/PMC8721081/#:~:text=Additional causes of yellow skin,the clinical features of Kwashiorkor.   Hello, @Staticgypsy, I would not recommend cutting so many nutritious foods out of ones diet.  Oxalates can cause problems like kidney stones, but our bodies can process oxalates out of our systems with certain vitamins like Vitamins A and D and Pyridoxine B 6.   People with Celiac disease are often low in fat soluble vitamins A and D, as well as the water soluble B vitamins like Pyridoxine B 6.  Focus on serving your granddaughter nutrient dense meals to ensure she gets essential vitamins and minerals that will help her grow. Micronutrient inadequacy and urinary stone disease: an analysis of the National Health and Nutrition Examination Survey 2007-2018 https://pubmed.ncbi.nlm.nih.gov/36976348/ Multivitamins co-intake can reduce the prevalence of kidney stones: a large-scale cross-sectional study https://pubmed.ncbi.nlm.nih.gov/38564076/
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