Symptoms, possible celiac

[DK1984]

Hello everybody. 
my name is Daniel. i am a 37 year old male.

let me share my story.

from childhood i have allways been really thin. My mother and father and brother is Also really thin. So probly it is just thats how our genes are. 
When i look at picture from my childhood, pre-teen, teen, and start of adult age i look normal and felt normal as far as i remember. But from around the age of 23-25 my problems slowly started.

i remember it all started with headache and neckpain. Also Slowly hairloss (my father and grandfather is Bald so that just might be in the genes Also). Headache has been there ever since. More symptoms came along. I started looking more gainer in the face. I started feeling tired all the time. My eyes was amd still is going deeper and deeper inside my skull/eyesocket. My skin is dull/dry like im 70 years old.  Even more symptoms has come along from the age of around 30 and until now, and those symptoms are: blocked nasal passageway, fatigue, nausea, a bit of stomach pain (especially when waking up), stools is not looking normal (sometimes yellow/really light Brown, and Also sometimes close to dhiarea.  And LAST but not least, i have really hard time keeping my weight if i dont eat ALOT of calories.

I have been to my doctor since i was 28 (so around 9 years without getting a diagnose)

things that they have checked me for:

-bloodtest almost 20 times during those 9 years (never finding anything unusual)

-CT and MR scan of the head 8 years ago because of me complaining about headache at that time (nothing unusual Found)

-Chiropractor and Physiotherapist (because of the headache and small neck pain (not helped)

-Ear/nose/throat doctor several times (because of headache and blocked nasal passageway (Found that i have a deviated septum and i had surgery for that, and it did helped on the left side, but Right side is still blocked and need another surgery for that next week actually to get the septum corrected even more. Also my maxilaris sinus on both sides shows alot of gray color on the CT scan and there is no drainage. So the surgeon Will create a Chanel to drain Them or something like that)

-suggested to my doctor, after he have told me indirectly he cannot find out what is wrong with me and is giving up, that i should be tested for celiac.

-started eating glutenfree for around 3-4 weeks and Think i felt a small improvement, but started eating again 7 days before bloodtest for celiac, because i Found out that i should have consumed gluten before bloodtest, but my doctor didnt tell me that. (Blodtest came back negative, maybe because i wasnt eating gluten for a long period of time before the test?)

-was at the hospital last week because the stomach pain got worse and the stool was not looking good. I told the gastroenterologist my symptoms and she was really worried. She went and talk to a another gastroenterologist and Then she came back and said “there is a suspecion that it could be cancer in the colon” she rushed me into a schedule to get the camera up in the colon and Also in the small intestine. I was checked Yesterday and luckily they didnt find anything, they said it looked really fine.

-next i had a schedule tomorrow for a gastroscophy to check for celiac (finally!) but Then i asked Them like 3 Weeks ago when i booked the appointment if i should start eating gluten again so that the gastroscophy would should the correct result. I have even Called Them twice afterwards and asked Them again and i really pointes out that i Think they are wrong. But they keep telling me that i should just continue glutenfree diet. Then they Called me Yesterday to ask me something and Then i asked again for the 4. Time they Can test me if i have not consumed gluten for around 4 weeks and Then they said “ohhh sorry we made a mistake, you need to eat gluten, so start doing that and Then we Can see you in 3 weeks”🤦‍♂️🤦‍♂️🤦‍♂️
 

anyways, long story but here are the Reason i made it:

-when you heard my storie and know what i have been tested for and rules out, do you guys Think that my symptoms could be because of celiac?

-could the gastroscophy show a false negative?

-if i have celiac and have had it for like 20 years, could my symptoms be reversed on glutenfree diet or has the damage been done permantly😖?

-any suggestions for me or should i just await the gastroscophy ?

 

[DK1984]

3 minutes ago, DK1984 said:

Hello everybody. 
my name is Daniel. i am a 37 year old male.

let me share my story.

from childhood i have allways been really thin. My mother and father and brother is Also really thin. So probly it is just thats how our genes are. 
When i look at picture from my childhood, pre-teen, teen, and start of adult age i look normal and felt normal as far as i remember. But from around the age of 23-25 my problems slowly started.

i remember it all started with headache and neckpain. Also Slowly hairloss (my father and grandfather is Bald so that just might be in the genes Also). Headache has been there ever since. More symptoms came along. I started looking more gainer in the face. I started feeling tired all the time. My eyes was amd still is going deeper and deeper inside my skull/eyesocket. My skin is dull/dry like im 70 years old.  Even more symptoms has come along from the age of around 30 and until now, and those symptoms are: blocked nasal passageway, fatigue, nausea, a bit of stomach pain (especially when waking up), stools is not looking normal (sometimes yellow/really light Brown, and Also sometimes close to dhiarea.  And LAST but not least, i have really hard time keeping my weight if i dont eat ALOT of calories.

I have been to my doctor since i was 28 (so around 9 years without getting a diagnose)

things that they have checked me for:

-bloodtest almost 20 times during those 9 years (never finding anything unusual)

-CT and MR scan of the head 8 years ago because of me complaining about headache at that time (nothing unusual Found)

-Chiropractor and Physiotherapist (because of the headache and small neck pain (not helped)

-Ear/nose/throat doctor several times (because of headache and blocked nasal passageway (Found that i have a deviated septum and i had surgery for that, and it did helped on the left side, but Right side is still blocked and need another surgery for that next week actually to get the septum corrected even more. Also my maxilaris sinus on both sides shows alot of gray color on the CT scan and there is no drainage. So the surgeon Will create a Chanel to drain Them or something like that)

-suggested to my doctor, after he have told me indirectly he cannot find out what is wrong with me and is giving up, that i should be tested for celiac.

-started eating glutenfree for around 3-4 weeks and Think i felt a small improvement, but started eating again 7 days before bloodtest for celiac, because i Found out that i should have consumed gluten before bloodtest, but my doctor didnt tell me that. (Blodtest came back negative, maybe because i wasnt eating gluten for a long period of time before the test?)

-was at the hospital last week because the stomach pain got worse and the stool was not looking good. I told the gastroenterologist my symptoms and she was really worried. She went and talk to a another gastroenterologist and Then she came back and said “there is a suspecion that it could be cancer in the colon” she rushed me into a schedule to get the camera up in the colon and Also in the small intestine. I was checked Yesterday and luckily they didnt find anything, they said it looked really fine.

-next i had a schedule tomorrow for a gastroscophy to check for celiac (finally!) but Then i asked Them like 3 Weeks ago when i booked the appointment if i should start eating gluten again so that the gastroscophy would should the correct result. I have even Called Them twice afterwards and asked Them again and i really pointes out that i Think they are wrong. But they keep telling me that i should just continue glutenfree diet. Then they Called me Yesterday to ask me something and Then i asked again for the 4. Time they Can test me if i have not consumed gluten for around 4 weeks and Then they said “ohhh sorry we made a mistake, you need to eat gluten, so start doing that and Then we Can see you in 3 weeks”🤦‍♂️🤦‍♂️🤦‍♂️
 

anyways, long story but here are the Reason i made it:

-when you heard my storie and know what i have been tested for and rules out, do you guys Think that my symptoms could be because of celiac?

-could the gastroscophy show a false negative?

-if i have celiac and have had it for like 20 years, could my symptoms be reversed on glutenfree diet or has the damage been done permantly😖?

-any suggestions for me or should i just await the gastroscophy ?

 

When i wrote “i started to look more gainer in the face, i ment that i started to look more gaunt in my face.

so my face is alot more sunken in

[trents]

Welcome to the forum, Daniel!

Your symptoms scream of either celiac disease or NCGS (Non Celiac Gluten Sensitivity). NCGS and celiac disease (Celiac Disease) share many of the same symptoms. Untreated Celiac disease causes damage to the villi of the small bowel because of the constant inflammation. Untreated NCGS can do damage to the body in other ways. By untreated, I mean failure to institute a gluten-free (Gluten Free) diet. As you know, there are specific serum antibody tests that can be run to check for the inflammation in the small bowel lining that gluten consumption causes in the case of celiac disease. Because gluten does not cause inflammation in the lining of the SB in the case of NCGS, there are no serum tests for NCGS. And because there is no inflammation there is is no damage to the villi so a biopsy would be negative. In short, there are no tests yet for NCGS. celiac disease must first be ruled out.

The Mayo Clinic guidelines for the pretest gluten challenge when preparing for the serum antibody testing is the daily consumption of 1-2 slices of wheat bread (or the gluten equivalent) for 6-8 weeks leading up to the blood draw and for two weeks leading up to the endoscopy/biopsy. So, yes, it is possible your testing has been negative because of abbreviated exposure to gluten. Unfortunately, we here this same story over and over on the forum and it is a testimony to the ignorance present in the medical community about celiac disease and proper diagnostic procedures. So, if you can endure two weeks of eating two slices of wheat bread before the endoscopy/biopsy you should have a valid result. The endoscopy/biopsy is considered the "gold standard" of celiac disease diagnosis.

Edited October 7, 2022 by trents

[DK1984]

3 minutes ago, trents said:

Welcome to the forum, Daniel!

Your symptoms scream of either celiac disease or NCGS (Non Celiac Gluten Sensitivity). NCGS and celiac disease (Celiac Disease) share many of the same symptoms. Untreated Celiac disease causes damage to the villi of the small bowel because of the constant inflammation. Untreated NCGS can do damage to the body in other ways. By untreated, I mean failure to institute a gluten-free (Gluten Free) diet. As you know, there are specific serum antibody tests that can be run to check for the inflammation in the small bowel lining that gluten consumption causes in the case of celiac disease. Because gluten does not cause inflammation in the lining of the SB in the case of NCGS, there are no serum tests for NCGS. And because there is no inflammation there is is no damage to the villi so a biopsy would be negative. In short, there are no tests yet for NCGS. celiac disease must first be ruled out.

The Mayo Clinic guidelines for the pretest gluten challenge when preparing for the serum antibody testing is the daily consumption of 1-2 slices of wheat bread (or the gluten equivalent) for 6-8 weeks leading up to the blood draw and for two weeks leading up to the endoscopy/biopsy. So, yes, it is possible your testing has been negative because of abbreviated exposure to gluten. Unfortunately, we here this same story over and over on the forum and it is a testimony to the ignorance present in the medical community about celiac disease and proper diagnostic procedures. So, if you can endure two weeks of eating two slices of wheat bread before the endoscopy/biopsy you should have a valid result. The endoscopy/biopsy is considered the "gold standard" of celiac disease diagnosis.

Hello trents. I REALLY really appreciate you taking the time to answer. I dont know much about the organs in the body or how to test for things. I trusted my doctor but he have failed. It was even myself that suggested him to give me a referal to celiac test. In the 10 years time he didnt even mentioned it himself. 
anyway. I allready started eating gluten today.  I ate 3 danish for breakfast 08:00 and a good portion of wheat pasta for lunch 12:00

at around 11:00 i allready started feeling blocked in the Right nasal (wasnt blocked earlier), small headache began to show up, felt like my body was burning a little inside or like there was a small raise in bodytempature and Then the Daily fatigue set in at around 14:00.
after so Many years feeling sick i actually hope it is Celiac i have. I know it sounds stupid but at least i recieve peace and answers if i get confirmed celiac and Then i Can work with that the best Way possible.

[trents]

Concerning your nasal swelling and blockage. That is likely a histamine reaction triggered by gluten/celiac disease. Celiac disease is an autoimmune disorder, not an allergy but years of untreated celiac disease typically results in allergies and intolerance to some other (non-gluten) foods. You could also be allergic to wheat or to the gluten component of wheat. Anyway, I would suggest purchasing some fexofenadine hcl (Allegra) or citirizine (Zyrtec) to suppress histamine production. They are both available over the counter, at least in the USA.

[DK1984]

15 minutes ago, trents said:

Concerning your nasal swelling and blockage. That is likely a histamine reaction triggered by gluten/celiac disease. Celiac disease is an autoimmune disorder, not an allergy but years of untreated celiac disease typically results in allergies and intolerance to some other (non-gluten) foods. You could also be allergic to wheat or to the gluten component of wheat. Anyway, I would suggest purchasing some fexofenadine hcl (Allegra) or citirizine (Zyrtec) to suppress histamine production. They are both available over the counter, at least in the USA.

I Will defently do that.

should i wait to buy and take zyrtec until i get the biopsy from the celiac test? Or Can i just eat Them starting from tomorrow?

[trents]

1 minute ago, DK1984 said:

I Will defently do that.

should i wait to buy and take zyrtec until i get the biopsy from the celiac test? Or Can i just eat Them starting from tomorrow?

No, don't wait. Taking an antihistamine will have no impact on celiac disease testing but may alleviate some of your nasal/sinus distress. Zyrtec and Allegra are newer antihistamine products that shouldn't produce drowsiness as would Benadryl (diphenhydramine). So they shouldn't impair function when trying to work, drive or study.

[DK1984]

4 minutes ago, trents said:

No, don't wait. Taking an antihistamine will have no impact on celiac disease testing but may alleviate some of your nasal/sinus distress. Zyrtec and Allegra are newer antihistamine products that shouldn't produce drowsiness as would Benadryl (diphenhydramine). So they shouldn't impair function when trying to work, drive or study.

Thanks alot buddy

gonna buy zyrtec tomorrow 🫵☺️
 I have Also heard that a person Can have histaminintolerence so if my celiac biopsy comes back negative Then maybe i should be looking in to eleminating histamin Rich food for a couple of weeks to see if that Can help.🤷‍♂️

[trents]

Yes, histamine intolerance is a real thing and common in the celiac community. I'm reasonably certain I am one of those. Cutting down on high histamine foods can also help. You might also look into a supplement known as DAO (diamine oxidase). The problem is created by the damage done to the gut lining by celiac disease where DAO is produced in the body. DAO breaks down histamines in the body. DAO supplements are not inexpensive, however.

[DK1984]

10 hours ago, trents said:

Yes, histamine intolerance is a real thing and common in the celiac community. I'm reasonably certain I am one of those. Cutting down on high histamine foods can also help. You might also look into a supplement known as DAO (diamine oxidase). The problem is created by the damage done to the gut lining by celiac disease where DAO is produced in the body. DAO breaks down histamines in the body. DAO supplements are not inexpensive, however.

Is it possible to be tested for histamin intolerence?

[DK1984]

Also one more question.☺️

if i have had celiac for like 20 years.

 Why did all the symptoms not start all at once? 
why is more and more showing up and why is the symptoms getting stronger and stronger as times go on. Why did all the symptoms not show up at full Force to begin with?🤷‍♂️

[trents]

4 hours ago, DK1984 said:

Is it possible to be tested for histamin intolerence?

https://www.healthline.com/health/histamine-intolerance#diagnosis The testing sounds like it is not a cut and dry thing, however.

Mast Cell Activation Syndrome (MCAS) is often the underlying cause of Histamine intolerance and there is specific testing for that. Google it.

[trents]

2 hours ago, DK1984 said:

Also one more question.☺️

if i have had celiac for like 20 years.

 Why did all the symptoms not start all at once? 
why is more and more showing up and why is the symptoms getting stronger and stronger as times go on. Why did all the symptoms not show up at full Force to begin with?🤷‍♂️

Celiac disease is an autoimmune disorder with a genetic base. Two genes, HLDQ2 and HLDQ8, have so far been identified as the culprit but there are others that are being discovered that may also come into play. But these seem to be the main ones. Having either DQ2 or DQ8 only establishes the potential for celiac disease. Having one or both genes does not mean you will definitely get celiac disease at some point. In fact, most people with the genes never get celiac disease. The reason is that the potential inherent in the genes must be turned on by some triggering biological/physiological stress event such as a viral infection or other health event or even prolonged emotional/psychological distress that affects your health. Without the trigger, celiac disease remains latent. So, the active form of the disease can be "triggered" an any time in life. For many or most people, it takes years to get a diagnosis once the active form of celiac disease, once triggered. The symptoms may be imperceptible for years or mistaken for other medical problems, as you have discovered. Many celiacs are "silent" for years until the damage to the small bowel villi becomes serious enough to produce more dramatic symptoms. By that time, much collateral damage to the body may have happened.

[trents]

As far as histamine intolerance goes, keep in mind that it's the total histamine load in your body at any given time that is what counts. So, it may vary from one time of year to the next depending on pollen and dust counts or other things you are allergic to in your environment (inhaled allergens). So, it's not just food things. But if you can lower the histamines from your food intake that will lower the total histamine load, or alternatively, increase your DOA count through supplementation. You might look into allergy testing, particularly the kind known as ALCAT.

Edited October 8, 2022 by trents

[DK1984]

12 minutes ago, trents said:

As far as histamine intolerance goes, keep in mind that it's the total histamine load in your body at any given time that is what counts. So, it may vary from one time of year to the next depending on pollen and dust counts or other things you are allergic to in your environment (inhaled allergens). So, it's not just food things. But if you can lower the histamines from your food intake that will lower the total histamine load, or alternatively, increase your DOA count through supplementation. You might look into allergy testing, particularly the kind known as ALCAT.

Thank you for all the helpfull information.

i Think i need to take 1 step at a time. So i will  await the biopsy for celiac and Then if that is negative, Then i would ask Them to look further to find out what is wrong with me.

a little sidenote. A started gluten in my diet Yesterday because of the upcoming biopsy in 3,5 weeks. I consumed quite an amount for gluten Yesterday and today i woke up after sleeping 12 hours straight with one of the biggest headaches i had for years and fatigue and my body just felt like there was absolutly no muscels to keep my standing up. I have been glutenfree for around 2,5 weeks This time up until Yesterday.  I really really Think that This thing i have could be Celiac.

3,5 weeks and i will have the answer ☺️
 

only thing i Found Strange is that all my blodtests looks fine according to my doctor. I would have thought that some vitamin defeciensy or something would show up🤷‍♂️
 

[trents]

You could have NCGS instead of celiac disease. Either way, gluten is the culprit and would need to be eliminated from your diet.

Most people find that when they go back on gluten for testing purposes that they are more ill than before. When we go off gluten we lose all tolerance of it.

I suffer from migraines myself or at least cluster headaches. So, I can relate.

[DK1984]

12 minutes ago, trents said:

You could have NCGS instead of celiac disease. Either way, gluten is the culprit and would need to be eliminated from your diet.

Most people find that when they go back on gluten for testing purposes that they are more ill than before. When we go off gluten we lose all tolerance of it.

I suffer from migraines myself or at least cluster headaches. So, I can relate.

🙏🤝

now that you know that much about celiac. I have one last question for now.

my face has lost volume during the last 10 years. Its like my face is more gaunt. And Also my eyes has sunken more and more inside my eyesocket. It makes me look reallly sick.

do you Think that, if i have celiac or NCGS, that my face and eyes would go back to a more normal healthy looking State if going on a glutenfree diet? Or has the damage been done😖

 

[trents]

Have you experienced significant body weight loss during this time?

[DK1984]

6 minutes ago, trents said:

Have you experienced significant body weight loss during this time?

No. I feel like i have lost mass in my head and arms and legs but i havent lost weight when im going on the weight scalp. Nut that is probly because i have more fat around my stomach now so that kind of compensate for the weight scale not to show weightloss. Does it make sence?

lately alot of people have asked me in a concerning Way “hey didnt you lost weight”?

And i have allways been really thin so it is not in a positive Way that people ask me.

even though i have not lost weight, i probly look like i have because my face have lost some mass and look gaunt and that is probly why people ask me

[trents]

7 minutes ago, DK1984 said:

No. I feel like i have lost mass in my head and arms and legs but i havent lost weight when im going on the weight scalp. Nut that is probly because i have more fat around my stomach now so that kind of compensate for the weight scale not to show weightloss. Does it make sence?

lately alot of people have asked me in a concerning Way “hey didnt you lost weight”?

And i have allways been really thin so it is not in a positive Way that people ask me.

even though i have not lost weight, i probly look like i have because my face have lost some mass and look gaunt and that is probly why people ask me

So, it sounds like you are saying you have lost muscle mass which has been replaced by fat such that your body weight has remained the same but there have been changes in your appearance. I do not have any insight into the structural changes in your face besides that. What I can tell you is that prolonged, unattended celiac disease invariably results in nutritional deficiencies. The constant inflammation from gluten consumption wears down the "villi" that line the small bowel resulting in less and less efficiency of nutrient absorption. This section of the small bowel is where all nutrient absorption happens. The damage to the villi greatly reduces the surface area where absorption happens. So, even though we may be eating well, the nutrients in our food aren't be utilized well. Many celiacs lose body weight because of this but some actually gain weight (unhealthy fat) because they are instinctively eating more (calories) trying to compensate for the poor efficiency in nutrient absorption.

Because of this, it is really important for celiacs to utilize extensive and intensive vitamin and mineral supplementation and to make sure those vitamins and supplements are gluten free.

[DK1984]

22 minutes ago, trents said:

So, it sounds like you are saying you have lost muscle mass which has been replaced by fat such that your body weight has remained the same but there have been changes in your appearance. I do not have any insight into the structural changes in your face besides that. What I can tell you is that prolonged, unattended celiac disease invariably results in nutritional deficiencies. The constant inflammation from gluten consumption wears down the "villi" that line the small bowel resulting in less and less efficiency of nutrient absorption. This section of the small bowel is where all nutrient absorption happens. The damage to the villi greatly reduces the surface area where absorption happens. So, even though we may be eating well, the nutrients in our food aren't be utilized well. Many celiacs lose body weight because of this but some actually gain weight (unhealthy fat) because they are instinctively eating more (calories) trying to compensate for the poor efficiency in nutrient absorption.

Because of this, it is really important for celiacs to utilize extensive and intensive vitamin and mineral supplementation and to make sure those vitamins and supplements are gluten free.

Allright buddy thanks alot. 🤝🤝🤝

[trents]

In the blood work you have had done, did they check your liver enzymes? These tests would be in what is called a CMP (Complete Metabolic Panel) but would not be included in an ordinary CBC (Complete Blood Count). What about thyroid hormone levels? Your physical changes make me wonder if there is some metabolic dysfunction going on.

Also, have you had your testosterone levels checked?

Edited October 8, 2022 by trents

[DK1984]

41 minutes ago, trents said:

In the blood work you have had done, did they check your liver enzymes? These tests would be in what is called a CMP (Complete Metabolic Panel) but would not be included in an ordinary CBC (Complete Blood Count). What about thyroid hormone levels? Your physical changes make me wonder if there is some metabolic dysfunction going on.

Also, have you had your testosterone levels checked?

I had my testosterone lvl checked and that was ok.

i dont know about the others. But my doctor has taken alot of blodtest on me over a long period of time, i would find it Strange if he didnt check those things you mentioned

[DK1984]

45 minutes ago, trents said:

In the blood work you have had done, did they check your liver enzymes? These tests would be in what is called a CMP (Complete Metabolic Panel) but would not be included in an ordinary CBC (Complete Blood Count). What about thyroid hormone levels? Your physical changes make me wonder if there is some metabolic dysfunction going on.

Also, have you had your testosterone levels checked?

I Can se my liver was Also checked and the range is 10-70 U/L and mine is 29 so that should be ok

[knitty kitty]

10 hours ago, DK1984 said:

🙏🤝

now that you know that much about celiac. I have one last question for now.

my face has lost volume during the last 10 years. Its like my face is more gaunt. And Also my eyes has sunken more and more inside my eyesocket. It makes me look reallly sick.

do you Think that, if i have celiac or NCGS, that my face and eyes would go back to a more normal healthy looking State if going on a glutenfree diet? Or has the damage been done😖

 

Hello,

From the description of your stools, you may be having fat malabsorption which is common in Celiac Disease.  

In early Thiamine insufficiency, the body starts conserving thiamine by burning our own muscles for energy.  Your weight or body mass index may have changed.  Is your added middle fat or edema (water retention)?   

The gauntness of your face and sunken eyes reflect your body's depletion of fat underlying the skin.  Sunken eyes  and dark undereye circles can also denote Vitamin B12 deficiency.  

Thiamine Vitamin B1 is required by the gallbladder in order to produce bile which helps digest fats.  The color changes in the stool can reflect less bile (bile makes poop brown) and fat malabsorption (the yellow and mucus part).

Checking for nutritional deficiencies is part of proper follow up care for Celiac people.  

Ask your doctor to test for deficiencies in Thiamine, B12, Vitamin D and magnesium.  

Hope you find answers soon. Keep us posted on your progress!