Just diagnosed (blood work) awaiting endo. many questions. please help.

[kopiq]

Hi . I was just diagnosed by my GP who dosent really know anything about Celiac disease and am awaiting to see a Gastro Specialist.

Unknowingly I have been eating whole grains and tons of gluten the last two years and so sick and couldn't figure out why until i finally found a dr to run blood work.

Ive cut out all gluten since yesterday and feel better. my issues now area very sore stomach (healing i presume)

and more importantly also Iam not absorbing nutrients. Im 6'1 i38 lbs. a walking skeleton with no body fat.

my vitamin D is very low and the dr prescribed me 3000 iu a day. I took 1500iu and i felt like i was in a coma. eating carbs on top of it made it worse and i developed bad muscle pain in my feet and fingers and sever headache.

the effects of food hit me hard, its a very slow digestion process, the calming effects of brown rice or buckwheat for example make me feel medicated for hours and into the next day.

this i take it is the slow absorption of food and nutrients? my stomach feels dead, possible gastritis?

how long for my stomach and small intestine to heal to get back its strength, what vitamins will help repair the damage of my stomach and small intestine?

would taking vitamins through skin patch work better than pills? im very hesitant to take any more vitamins pills as i cant take much and the effects are very strong and long lasting.

thanks for any advice.

[OfcVal]

It can take some people years to heal. The good news is that you will continue to feel better by not allowing gluten into your diet.  Also get tested for other food allergies such as eggs, dairy, soy…. as many people with Celiac also have other food allergies which can make you feel lousy even though you are not consuming gluten.  

[kopiq]

Thank you

[trents]

Ditto to what OfcVal said. It is common for celiacs to cross react to other foods like they do to gluten, especially foods that have proteins similar in structure to gluten. Chief among them are dairy, oats, eggs and soy. Dairy is the most frequent culprit. One small study found 50% of celiacs react to CMP (Cow's Milk Protein) like they do gluten. Just something to monitor.

Focus on simple cooking and fresh foods. Avoid seasonings and spices because they can contain gluten either intentionally or through cross contamination during processing. Stick to salt and pepper. Rely on fresh meat, fresh veggies, fresh fruit. Avoid eating out. Avoid relying on a lot of pre-packaged gluten snacks and foods because they are not only expensive but also largely devoid of nutrition. Gluten free flours are not required by government regulations to be fortified as are their mainstream gluten-containing counterparts.

I have not had any experience with epidermal patch vitamin products so I won't comment on that. On this forum we commonly recommend: 

• sublingual B12
• B-complex
• Magnesium (glycinate or citrate form, not magnesium oxide)
• D3 (5-10k IU daily)
• zinc picolinate 

Make sure all your supplements and any meds you are taking are gluten free. 

It commonly takes two years or more for complete healing of the damaged villous lining of the small bowel but improvement in symptoms and health usually starts within weeks of going gluten free. The healing time depends on a number of things including severity of damage, age and consistency and dedication with regard to the gluten free diet. 

I am including a link to an article that should be helpful in getting you off on the right foot in your efforts to eat gluten free. Some things in this article may be overkill unless you are a supersensitive celiac but it is very helpful nonetheless: 

But please hear this! If the gastroenterologist wants to perform an endoscopy with biopsy of the small bowel lining to confirm your general practitioner's diagnosis of celiac disease, you should continue to consume normal amounts of gluten until the procedure or you risk invalidating the outcome by starting a gluten free diet ahead of that. Many have made this mistake. Do you have an appointment date yet with the gastroenterologist? In the USA it is normal practice for positive blood work results to be confirmed by an endoscopy/biopsy. The latter is considered the gold standard of celiac disease diagnosis. Do you know if you already have an official diagnosis of celiac disease in your medical record from your GP? I ask this because you stated in your first post that your GP didn't know much about celiac disease.

 

 

Edited October 16, 2024 by trents

[Wheatwacked]

17 hours ago, kopiq said:

I took 1500iu and i felt like i was in a coma. eating carbs on top of it made it worse and i developed bad muscle pain in my feet and fingers and sever headache.

That sounds more like a withdrawal from gluten reaction.  Gluten affects the opiod rececptors and like withdrawal from opidis it can take two week or so to withdraw.  Over the years the opiod effect of gluten has been masking the pain. Take it easy,  for the time being eat what makes your tummy happy.  Barring gluten.

17 hours ago, kopiq said:

Ive cut out all gluten since yesterday and feel better.

That pretty much is your answer.  You either have Celiac Disease or Non Celiac Gluten Sensitivity,  whatever the results with the gastro are.

In the UK there are financial and tax benefits to an official diagnosis.  It the US it may affect your health insurance negatively.  So you need to evaluate how important an official diagnosis is.  You have a diagnosis from the doctor, and even one day made you feel better.  How much more proof do you need that gluten affects you poorly?  This article may help you decide.   Are You Confused About Your Celiac Disease Lab Results?

As trents mentioned if you are continuing with diagnosis you need to continue to eat gluten.  The gastroenterologist will likely want to do an endoscopy looking for damage to your small intestine.  The good about GFD Gluten Free Diet is you feel better.  The bad is that as soon as you begin to heal there is less chance of finding damage. Catch 22.

Vitamins can contain gluten, though it's rare.  Either verify yours is gluten free, or simply get one that is.  But it is very important to raise your vitamin D level.  Even taking 10,000 IU a day it took from 2014 until 2021 to raise my level to 80 ng/mg ( in some labs it's measured as 200 nmol/L).   Get tested again in three months to see how much your blood level has gone up.  You may need to increase.

Starting GFD is just the start.  No gluten diet removes the cause of the damage.  Now you have to replenish your vitamin deficiencies and repair the damage.  

I often get lethagic after eating so I eat in the evening.  It seems that all that I eat goes straight to belly fat.  To keep up energy during the day and keep hunger in bay during the day I drink a lot of Red Bull.  It has suger and glucose for energy (all other foods have to be processed by your already sluggish liver), the vitamins and minerals you need to transport to the mitochondria and convert to ATP and Taurine, an essential amino acid antioxident that our body makes to nutraize the oxidents created by the conversion of glucose to ATP.

What other vitamins and meds are you taking?  Check them and even your shampoo for gluten.

Common deficiencies that can cause your symptoms are Thiamine, Choline, and Iodine.

How long you take to heal depends on how much damage there is, your age, and how well you fulfill your essential vitamins and minerals.  Six months to two years to repair your small intestine.  You also need to repair the damage done by malnutrition.

Without the gluten numbing your gut you may find foods that did not bother you now do.  Also your gut bacteria will be changing.  Yogourt and fermented foods like pickles (no vinegar)  will speed that along.  Choose vegetables with low omega six.  Overall you want less than 3 omega 6 molecules in you diet for every 1 omega 3.  Omega-3 and Omega-6 Fatty Acids in Vegetables:

[kopiq]

thanks, sorry for the late reply, i havent been well. my dr said my vitamin D is low at 36 and to take 3000 iu a day. I tired it for two days all i could manage was 1500IU and i felt like i was in a coma for hours, then massive headaches. i cut the vitamin d out and got my own all natural multivitamin with 40IU D alongside a calcium//magnesium and zinc multi vitamin. everything digests so slow and i feel the effects of food for hours if not days especially oatmeal. I get so tired, lethargic and lose of interest in everything.

i'm eating a lot of brown and white rice, buckwheat, gluten free flours and making my own breads/pancakes. eating about 4 eggs a day. Ive even tried gluten free torillias but the fat weighs me down its like is so slow to abosrb i feel gross and greasy inside.

 

is this normal? for foods to effect me so much? how can i cope? just eat bland/no fat?

 

 

[kopiq]

I now i need vitamins, but how am i suppose to work when i feel comastose at 1500IU vitamin d and headaches?

[trents]

No, this is certainly not normal.

Besides 4 eggs a day, what else are you eating to get protein? Four eggs only gives you about 32-36 g. of protein daily. At your height and weight you ought to be consuming 3-4x that much at least.

Have you had your pancreatic enzyme levels checked?

I fear your are experiencing some kind of metabolic syndrome and you need some specialized nutritional supervision, maybe even TPN (Total Parenteral Nutrition).

[kopiq]

I eat a lot through out the day. 4 boiked eggs, chicken breast, pork chop, three bowls of rice, a potato,  at least 2 two or three 1/3 cup buckwheat pancakes as snacks and some gluten free rice crackers as snacks and mix veggies with at least one meal.

This is a normal day for me. Also the pancakes sometimes have eggs mixed in them

Sometimes ground beef patty as well

[trents]

Okay, that sounds a lot better from a protein and calorie intake standpoint.

[Wheatwacked]

What Brand vitamin D are you taking?  What else is in it?  Do I understand correctly that you take 1500 IU of vitamin D and you get comatose and headaches and if you don't you are oK?  

A diet consisting mainly of white flour, white sugar, and other highly processed carbohydrates can cause thiamin deficiency. At first, people have vague symptoms such as fatigue and irritability, but a severe deficiency (beriberi) can affect the nerves, muscles, heart, and brain.

Your diet seems adequate.  Are you getting enough B1,B2, B3, B5 and B12?

Are you taking any other prescriptions or supplements?

 

[kopiq]

it is webbers all natural vitamin d. i stopped taking it as it was killing my stomach, i have gastritis as well. i seem to be able to tolerate webbers "one a day multi vitamin" anything high dose weather food, pills etc just upset my stomach lining. i have a very slow absorption rate and i can feel the effects last for hours. i cannot tolerate any fats, oils etc.  If i stay away from fats, oils for ahwile couple weeks, i can start to incorporate them again in small doses but eventually my stomach lining caves in and i feel sick and have burning pain. i eat alot of brown rice, potaoes with skin, buckwheat.

 

my dr only mentioned low vitamin D last appointment. you would think after bloodwork she would have told me of any other deficiencies?

[trents]

But do you actually know what deficiencies she tested you for? Most traditional medicine doctors are not much into nutritional deficiencies. In my experience, they will test you for D and B12 deficiencies but that's about it.

[Wheatwacked]

Look at all the extra crap they have added.  No wonder you get sick from it.  Get a brand that is just vitamin D3.

[knitty kitty]

@kopiq,

Welcome to the forum!

Be proactive.  Call the GI Specialist and ask if you need to be eating gluten for the endoscopy.  Ask if you can get on a cancellation list to be seen sooner.  If you stop eating gluten before the endoscopy, healing will take place, not giving an accurate picture of what damage is being done in reaction to gluten.  

Ask for a DNA test to look for known common Celiac Disease genes.  You don't have to eat gluten for this test.  

Loss of weight, not being able to put on weight, and intolerance of fats points to a deficiency in Thiamine Vitamin B1.  We need all eight essential B vitamins, but Thiamine runs out first. 

Thiamine deficiency causes gastrointestinal symptoms, including Gastroparesis where food doesn't move through the digestive tract properly.  I've had Thiamine deficiency myself.  Thiamine and Niacin B 3 deficiencies results in Gerd.

Thiamine is needed to process fats, as well as carbohydrates and proteins, and turn them into energy.  Thiamine and the other B vitamins are needed to make digestive enzymes.  Vitamin D is a fatty vitamin.  

Thiamine is needed to make insulin.  Your consumption of so many carbohydrates may be interfering with your blood glucose levels.  The more carbohydrates you eat, the more Thiamine is needed.  A minimum of 300 mgs/day of Benfotiamine should help.  High Carbohydrate Malnutrition is caused by eating a high carbohydrate diet without sufficient Thiamine.  That "Carbohydrate Coma" you have after meals sounds like symptoms of  Thiamine insufficiency and High Calorie Malnutrition and possibly a prediabetic condition.  Consistently having high blood glucose levels can precipitate type two diabetes.  Ninety percent of diabetics have thiamine deficiency.

Headaches can be caused by deficiency in Riboflavin B 2.  Headaches can also be caused by high histamine levels.  Histamine is released during inflammation.  Some foods contain high levels of histamine.  Eggs contain high histamine levels.  Pyridoxine B6, Vitamin C, Cobalamine B12 and Thiamine are needed to make enzymes that destroy histamine.  Following a low histamine Paleo diet, like the Autoimmune Protocol Diet, will lower your body's histamine levels.  Vitamin D helps lower inflammation and regulates the immune system.  

Those muscle pains in feet and fingers, neuropathy, can be caused by Thiamine deficiency.  

Since Thiamine deficiency is serious and blood tests for Thiamine deficiency is inaccurate, taking Thiamine and looking for improvement is the best way to test.  I had improvement within half an hour when I took Thiamine.  I take 300 mg Benfotiamine with meals.

Do you ever eat vegetables?

References:

Thiamine deficiency disorders: a clinical perspective

https://pmc.ncbi.nlm.nih.gov/articles/PMC8451766/

[kopiq]

19 hours ago, trents said:

But do you actually know what deficiencies she tested you for? Most traditional medicine doctors are not much into nutritional deficiencies. In my experience, they will test you for D and B12 deficiencies but that's about it.

no, my dr is through a medical group in Canada "apple tree" i have no way to contact her to give her any updates on how iam doing or tolerating medicine. I have another appointment in early November, but shes already told me she dosent know much about stomach issues and im awaiting a referral to a gastro specialist.

[kopiq]

5 hours ago, knitty kitty said:

@kopiq,

Welcome to the forum!

Be proactive.  Call the GI Specialist and ask if you need to be eating gluten for the endoscopy.  Ask if you can get on a cancellation list to be seen sooner.  If you stop eating gluten before the endoscopy, healing will take place, not giving an accurate picture of what damage is being done in reaction to gluten.  

Ask for a DNA test to look for known common Celiac Disease genes.  You don't have to eat gluten for this test.  

Loss of weight, not being able to put on weight, and intolerance of fats points to a deficiency in Thiamine Vitamin B1.  We need all eight essential B vitamins, but Thiamine runs out first. 

Thiamine deficiency causes gastrointestinal symptoms, including Gastroparesis where food doesn't move through the digestive tract properly.  I've had Thiamine deficiency myself.  Thiamine and Niacin B 3 deficiencies results in Gerd.

Thiamine is needed to process fats, as well as carbohydrates and proteins, and turn them into energy.  Thiamine and the other B vitamins are needed to make digestive enzymes.  Vitamin D is a fatty vitamin.  

Thiamine is needed to make insulin.  Your consumption of so many carbohydrates may be interfering with your blood glucose levels.  The more carbohydrates you eat, the more Thiamine is needed.  A minimum of 300 mgs/day of Benfotiamine should help.  High Carbohydrate Malnutrition is caused by eating a high carbohydrate diet without sufficient Thiamine.  That "Carbohydrate Coma" you have after meals sounds like symptoms of  Thiamine insufficiency and High Calorie Malnutrition and possibly a prediabetic condition.  Consistently having high blood glucose levels can precipitate type two diabetes.  Ninety percent of diabetics have thiamine deficiency.

Headaches can be caused by deficiency in Riboflavin B 2.  Headaches can also be caused by high histamine levels.  Histamine is released during inflammation.  Some foods contain high levels of histamine.  Eggs contain high histamine levels.  Pyridoxine B6, Vitamin C, Cobalamine B12 and Thiamine are needed to make enzymes that destroy histamine.  Following a low histamine Paleo diet, like the Autoimmune Protocol Diet, will lower your body's histamine levels.  Vitamin D helps lower inflammation and regulates the immune system.  

Those muscle pains in feet and fingers, neuropathy, can be caused by Thiamine deficiency.  

Since Thiamine deficiency is serious and blood tests for Thiamine deficiency is inaccurate, taking Thiamine and looking for improvement is the best way to test.  I had improvement within half an hour when I took Thiamine.  I take 300 mg Benfotiamine with meals.

Do you ever eat vegetables?

References:

Thiamine deficiency disorders: a clinical perspective

https://pmc.ncbi.nlm.nih.gov/articles/PMC8451766/

Thanks for all the good info! for many years i ate nothing but whole grains breads/pasta for all my carbs, 4 to 5 times a day. Went through personal mental traumatic experiences in a year, injured my stomach, and developed gastritis and now found out i tested positive in blood test for celiac. I will ask for a dna test. right now my stomach lining from gastriis is compromised. If i do not eat fats (even eggs) i will heal and about a month later i will incorporate small amounts fats into my diet (oils, meats etc) i will be good for about a week and then my stomach gives in and im in severe pain, burning and nasuea, loss of appetite. Foods i eat take a long time to absorb and i litterly feel the effects of food for hours sometimes days. i really need to heal my stomach. I fear an endoscopy / biopsy because for 1. it will most likely hurt my stomach and i will be in pain, loss of appetite and two the effects of the muscle relaxent they give will last for days. I will miss work and i cannot miss work at this time to much important things going on.

its been a year of gastritis roller coaster of healing then back to pain and loss of appetite, but staying clear of gluten has really helped me feel better. I can now feel the difference if i eat something with gluten or foods with out.

 

as for veggies with my gastritis they all pretty much hurt my stomach. I do try to get a mix blend of carrot, broccoli and cauliflower and spinach in every two days. but have no idea if iam absorbing nutrients or not.

 

I just found out through my mother that pernicious anemia runs in my family and she needs a b12 shot every month. I will be bringing this up to my dr next visit. my hair since my 30s has been very very thin never thought much of it but this might explain it.

 

 

[RMJ]

I noticed that you said you eat oats.  Are they labeled gluten free? Oats are often contaminated with wheat if special care isn’t taken.  Also, some with celiac disease react even to gluten free oats.

[kopiq]

No. I never really ate oats just whole grains. Mabey there was oats in them? I can't tolerate oats even gluten free, I've tried. 

 

I eat a lot of buckwheat now. Brown rice, all certified gluten free. 

[knitty kitty]

@kopiq,

Gastritis, B12 deficiency, and anemia are all conditions that can occur in Celiac Disease.

Loss of appetite, abdominal pain, and hair loss are symptoms of Thiamine deficiency.

Gluten free carbohydrates do not contain sufficient amounts of essential vitamins and minerals.  

Malabsorption of vitamins and minerals is a hallmark of Celiac Disease.  Correcting nutritional deficiencies will help you heal.

[kopiq]

Thank you. Not sure how to start as I still haven't heard from referral and my Drs appointment isn't until mid November. I'm trying multivitamin and eating gluten free that's all I can do for now I guess.

[knitty kitty]

A multivitamin is not going to correct nutritional deficiencies.  

The eight essential B vitamins are water soluble and easily lost with digestive problems.  Add a B Complex and Benfotiamine with your multivitamin.  

The B vitamins cannot be made in our bodies.  We must get them from foods or supplements every day.  

The more carbohydrates you eat, the more Thiamine is needed.  Benfotiamine has been shown to promote intestinal healing.  A minimum of 300 mg of Benfotiamine a day should be tried.  The World Health Organization says the best way to test for Thiamine deficiency is to take a form of Thiamine like Benfotiamine and look for health improvements.  I had improvement within an hour.  Thiamine is safe and nontoxic even in high doses.  

I've had symptoms like yours that resolved quickly after starting Benfotiamine and B Complex vitamins.  It's called Gastrointestinal Beriberi.  Read my blog.  

Hiding in Plain Sight: Modern Thiamine Deficiency

https://pubmed.ncbi.nlm.nih.gov/34685573/

Elevated Lactate Secondary to Gastrointestinal Beriberi

https://pubmed.ncbi.nlm.nih.gov/25876741/

Clinical profile of patients presenting with thiamine-responsive upper-gastrointestinal upset: A pointer toward gastric beriberi

https://pubmed.ncbi.nlm.nih.gov/35810577/

Gastrointestinal beriberi: a forme fruste of Wernicke’s encephalopathy?

https://pmc.ncbi.nlm.nih.gov/articles/PMC6040496/

[kopiq]

Thank you, will do!

[Wheatwacked]

6 hours ago, kopiq said:

If i do not eat fats (even eggs) i will heal and about a month later i will incorporate small amounts fats into my diet (oils, meats etc) i will be good for about a week and then my stomach gives in

Not eating meat and eggs will cause deficiency of choline which you need to create the bile needed to digest fat.  B12

You need to see a nutritionist as soon as possible because you have multiple symptoms of malnutrition.  

Thiamine deficient

Choline deficient

vitamin D deficient

family history of B12 deficiency

Vitamin B6 role: The body needs vitamin B6 to absorb vitamin B12. 

Iodine deficiency is a concern in some areas near Toronto, Canada

 

 

 

[kopiq]

Can a nutritionist get blood work done to test for deficiency? Or am I still waiting on a Dr for this?