Question before first GI appointment

[Vincent pemberton]

I’ve struggled with sickness my whole life, 24, male. doctors never really cared to do any extra testing till I met my current doctor, all other doctors told me growing up, would just treat symptoms of how I felt from b12 deficiency and nausea meds and told me to drink plenty of water.(I’ve had a lot more symptoms that just this) I’ve suffered every time I ate and doctors would say oh it’s a stomach bug or your just trying to get out of school stop faking sick. My parents believed them and I got tired of seeking my parents and doctors for help so I just shut up. When I ate I was always sick and honest started to believe it was normal, and everyone must feel like this when everyday. My current doctor did a test but I stopped eating gluten 5 days before the test and was IGA deficient. So it came back negative and I ate gluten for the first time after 10 days and was sicker than I have ever felt. I talked to my doctor and she said it was out of her zone and referred me to a GI which I see in 6 days I’ve been gluten free since with small hiccups and accidentally ate gluten and I’m even sick as I write this. They told me to avoid gluten till the appointment, but I only spoke to an MA and she didn’t really know, should I embrace this feeling of sickness and load up on gluten or wait for my appointment. 

[Wheatwacked]

Welcome to the forum Vincent,

     At this point you should follow the advice.  I am a little concerned that an MA working in a GI office in uncertain about Celiac Disease.  But it makes sense, it gives you I am sure a welcome reprieve.  Be sure to tell the story you told here to the doctor.  Maybe that will suffice for a diagnosis.  IGA deficient is an indication of autoimmune disease.  If a endoscopy or more blood tests are ordered you will need to gluten chalenge.  You have effectively proven that gluten free alleviates your condition.

 

[trents]

Yes, be sure to tell the doctor that you have been mostly avoiding gluten for a good amount of time because that will definitely sabotage celiac disease testing. It is frustrating that you have been the victim of so much indifference and ignorance in the medical community up to this point but unfortunately it is true that your story is not an uncommon one. If going back on gluten just for testing makes you too ill you may have to live with an unofficial diagnosis.

[Vincent pemberton]

Update, I saw my GI she set me up for a biopsy, she said I didn’t have to eat gluten, but it would give better test results. Should I eat gluten or avoid it, my biopsy is a six weeks away roughly.

[trents]

If you can do so without wrecking your health, yes, you definitely should be consuming gluten up to the day of your biopsy, 4-6 slices of bread or the gluten equivalent. Actually, the guidelines state that amount daily for a minimum of two weeks before the biopsy but if you are not yet on a gluten free diet just keep going.

[Vincent pemberton]

As an almost 2 week update for being back on gluten… it’s a living hell, to say the least, I’ve been so sick the last three days for some hours late in the day I couldn’t physically walk, my wife has had to help me get up and pretty much drag me to the bathroom and to bed. To add onto everything I woke up with a rash covering my entire left arm. Ever since going back on gluten from gluten free it has been so much worse, the pain is almost unbearable, I am trying to only have small amounts before my gluten challenge in a couple weeks but even small amounts are killing me. I want to do the gluten challenge I want my test results to be accurate, anyone have any tips?

[trents]

I know you are not wanting to here this @Vincent pemberton, but the updated guidelines for the gluten challenge are a 10g of gluten (the equivalent of 4-6 slices of bread) daily for at least two weeks leading up to the day of testing. How long altogether will you have been back on gluten by the time you are tested? And are you consuming enough gluten daily to ensure valid testing? The gluten challenge guidelines I shared above reflect more recent thinking on the part of the medical community who came to realize that former guidelines were not stringent enough to ensure reliable test results. Seems pretty obvious you have celiac disease. Why are you now seeing seeeking official confirmation?

Edited August 18 by trents

[Vincent pemberton]

7 hours ago, trents said:

I know you are not wanting to here this @Vincent pemberton, but the updated guidelines for the gluten challenge are a 10g of gluten (the equivalent of 4-6 slices of bread) daily for at least two weeks leading up to the day of testing. How long altogether will you have been back on gluten by the time you are tested? And are you consuming enough gluten daily to ensure valid testing? The gluten challenge guidelines I shared above reflect more recent thinking on the part of the medical community who came to realize that former guidelines were not stringent enough to ensure reliable test results. Seems pretty obvious you have celiac disease. Why are you now seeing official confirmation?

I’ve been on gluten for two weeks and have 4 more to go. I have only had small amounts, my GI said to ease myself into if I did decide to go back into gluten and I have started with small amounts like one slice of bread in size. Honestly I’m about to give up on gluten, I want a test result to be accurate because I want to know 100% if it is or not I know the way I feel should be enough but with doctors ignoring my problems before it makes me want to feel like I proved them all wrong when they told me I’m not sick. 

[Wheatwacked]

13 hours ago, Vincent pemberton said:

I woke up with a rash covering my entire left arm.

Dermatitis herpetiformis

If your rash is dermatitis herpetiformis you might be able to get a dermatologist to biopsy it.  It is taken from next to the rash, different technique than a normal rash biopsy.  Any way, dermatitis herpetiformis is the skin form of Celiac, so it could be a shortcut to your Gluten Challenge.

At the same time you can start dealing with the symptoms caused by malabsorption.

Almost everyone is vitamin D deficient.  It takes a long time to raise vitamin D to the optimum of 80 ng/ml.  That is the optimum level for immune, mental and bone health.  Vitamin D is one of the vitamins absorbed in the small intestine so dosage around 10,000 IU supply enough for the present and to start to bring it up.

Medical record review of celiac disease patients and fat-soluble vitamin levels measured at diagnosis between 1995 and 2012 at Mayo Clinic... None receiving vitamin supplements at the time of diagnosis... Average 25(OH)D vitamin levels 32.8 ng/mL; 9 patients had mild-to-moderate vitamin D deficiency, 31 patients showed insufficiency of 25(OH)D.  Possible Role of Vitamin D in Celiac Disease Onset

Thiamine, vitamin B1 can deplete in just a few weeks and can present as subclinincal gastrointestinal beriberi.  Again, because Celiac Disease often causes malabsorption it takes a higher dose of thiamine or benfothiame to reverse but it works within days.  There is a blood test available.

Quote

 Gastrointestinal symptoms, such as anorexia, nausea, vomiting and abdominal pain, are very common in patients with Wernicke’s encephalopathy (WE). Mild thiamine deficiency may have only gastrointestinal symptoms.  Gastrointestinal beriberi: a forme fruste of Wernicke’s encephalopathy?

Choline.  90% of westerners eat less than the 500 mg a day RDA.  The primary source is eggs and beef.  It is essenetial for acetylcholine, bile for fat digestion, to reduce homocysteine, mitochondria membrane formation.  Phoshatidylcholine or choline is available if you can't eat enough meat and eggs.

Quote

An intervention study in 57 healthy adults who were fed choline-deficient diets under controlled conditions found that 77% of men, 80% of postmenopausal women, and 44% of premenopausal women developed fatty liver, liver damage, and/or muscle damage (17). These signs of organ dysfunction resolved upon choline reintroduction in the diet. .. Together with several B-vitamins (i.e., folate, vitamin B12, vitamin B6, and riboflavin), choline is required for the metabolism of nucleic acids and amino acids, and for the generation of the universal methyl group donor, S-adenosylmethionine (SAM)  Choline 

 

[Vincent pemberton]

3 hours ago, Wheatwacked said:

Dermatitis herpetiformis

If your rash is dermatitis herpetiformis you might be able to get a dermatologist to biopsy it.  It is taken from next to the rash, different technique than a normal rash biopsy.  Any way, dermatitis herpetiformis is the skin form of Celiac, so it could be a shortcut to your Gluten Challenge.

At the same time you can start dealing with the symptoms caused by malabsorption.

Almost everyone is vitamin D deficient.  It takes a long time to raise vitamin D to the optimum of 80 ng/ml.  That is the optimum level for immune, mental and bone health.  Vitamin D is one of the vitamins absorbed in the small intestine so dosage around 10,000 IU supply enough for the present and to start to bring it up.

Medical record review of celiac disease patients and fat-soluble vitamin levels measured at diagnosis between 1995 and 2012 at Mayo Clinic... None receiving vitamin supplements at the time of diagnosis... Average 25(OH)D vitamin levels 32.8 ng/mL; 9 patients had mild-to-moderate vitamin D deficiency, 31 patients showed insufficiency of 25(OH)D.  Possible Role of Vitamin D in Celiac Disease Onset

Thiamine, vitamin B1 can deplete in just a few weeks and can present as subclinincal gastrointestinal beriberi.  Again, because Celiac Disease often causes malabsorption it takes a higher dose of thiamine or benfothiame to reverse but it works within days.  There is a blood test available.

Choline.  90% of westerners eat less than the 500 mg a day RDA.  The primary source is eggs and beef.  It is essenetial for acetylcholine, bile for fat digestion, to reduce homocysteine, mitochondria membrane formation.  Phoshatidylcholine or choline is available if you can't eat enough meat and eggs.

 

It is just weird I never had a rash till now, my symptoms have gotten so much worse. I am deficient on a lot of vitamins and take a crap ton, b12, D, C, and a multivitamin. If the rash goes away can they still test for Dermatitis herpetiformis, where I’m at it takes at least two weeks to get in for a referral to specialist.

[trents]

Make sure all your vitamins and supplements are gluten free.

I would doubt that a biopsy for dermatitis herpetiformis would be valid if the rash was already gone. How would they know where to take the sample of the bumps are gone? First, I would find a dermatologist who knows how to do the biopsy correctly because not all do. Not all of them even know about dermatitis herpetiformis. Then I would make an appointment and keep eating gluten.

[Vincent pemberton]

I’m giving up, I don’t care about the positive test result anymore I feel like I’ve been hit by a train, If I had to describe dying this is how I would describe it, I can touch anything or be touched without being in extreme pain. I am so swollen, my extremely loose watch that I could fit two fingers in between this morning was now cutting off circulation. If I stand I can’t bare my weight, and it feels like shards of glass are ripping open my feet. I was crying and it was even painful. My wife looked at me and said is it really worth it at this point, I said no. I am going back to gluten free, I will admit when I’m weak and I can’t do this for another month, I want to hold my daughter and play with her in the floor. I want to be happy. Thank you all for your support, I may never know if I have celiacs but I feel like I do, because it’s the only way I can explain what is going on with my body. 

[knitty kitty]

@Vincent pemberton,

How are you doing?  

I'm concerned because the symptoms you describe could be due to a very serious vitamin deficiency, Thiamine Vitamin B1 deficiency.  

Thiamine deficiency can present with edema of the arms and legs and neuropathy (pain and weakness in legs).  

I had a similar upbringing with my family not believing my tummy aches were real and being silenced.  You're not alone.

I've experienced Thiamine deficiency and know the symptoms firsthand.   My doctors didn't know what it was and wrote me off as crazy and told me I was making stuff up.  Doctors are not trained well in nutritional deficiencies.  Death can result from Thiamine deficiency (Beriberi), so it's serious.  

I'm attaching some articles that  describe Thiamine deficiency symptoms.  Thiamine deficiency can present in different ways.  If you think your symptoms match, please seek medical attention quickly.

Thiamine deficiency disorders: a clinical perspective

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

Hiding in Plain Sight: Modern Thiamine Deficiency

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

Thiamine deficiency: a commonly unrecognised but easily treatable condition

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10398819/

 

Ask for a genetic test.  Celiac Disease requires certain genes.  I was diagnosed by positive Celiac DNA and improvement on a gluten free diet.  I'm seronegative.  Diabetes, anemia and Thiamine deficiency will cause this.  I had all three, and I have two genes for Celiac Disease.  

Hope you feel better soon!

Keep us posted on your progress!

[Vincent pemberton]

3 hours ago, knitty kitty said:

@Vincent pemberton,

How are you doing?  

I'm concerned because the symptoms you describe could be due to a very serious vitamin deficiency, Thiamine Vitamin B1 deficiency.  

Thiamine deficiency can present with edema of the arms and legs and neuropathy (pain and weakness in legs).  

I had a similar upbringing with my family not believing my tummy aches were real and being silenced.  You're not alone.

I've experienced Thiamine deficiency and know the symptoms firsthand.   My doctors didn't know what it was and wrote me off as crazy and told me I was making stuff up.  Doctors are not trained well in nutritional deficiencies.  Death can result from Thiamine deficiency (Beriberi), so it's serious.  

I'm attaching some articles that  describe Thiamine deficiency symptoms.  Thiamine deficiency can present in different ways.  If you think your symptoms match, please seek medical attention quickly.

Thiamine deficiency disorders: a clinical perspective

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

Hiding in Plain Sight: Modern Thiamine Deficiency

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

Thiamine deficiency: a commonly unrecognised but easily treatable condition

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10398819/

 

Ask for a genetic test.  Celiac Disease requires certain genes.  I was diagnosed by positive Celiac DNA and improvement on a gluten free diet.  I'm seronegative.  Diabetes, anemia and Thiamine deficiency will cause this.  I had all three, and I have two genes for Celiac Disease.  

Hope you feel better soon!

Keep us posted on your progress!

Thank you for the response, I talked to my doctor and they are doing a blood test since my last test I was gluten free for. We are only doing a celiac panel. I do take vitamins for b12, D and C. I have never been tested for thiamine deficiency. I’ll mention it to my primary and see what they want to do.  Today I’m not as bad, I’m still in a lot of pain in my joints and numb, and I’m having really bad uncontrollable shaking. Last night on my last post, I had a horrible sense of impending doom. I haven’t had gluten today and if I did I honestly don’t know if I could even move, I am extremely weak and just numb and tingly all over and if I lift to much it hurts. I will definitely read the articles, my insurance wont cover a genetic screening, so when I have the money I’ll do one. Thank you so much for the help.

[knitty kitty]

Hi, @Vincent pemberton, 

I experienced High Calorie Malnutrition, a thiamine deficiency disorder. 

The more carbohydrates we eat, we need an increased amount of Thiamine to process the carbs into energy.  For every 1000 calories, we need 1 mg more minimum.  Increased intake of carbohydrates for the gluten challenge definitely would require more Thiamine. 

Consuming carbs would cause the Thiamine that you do have left to drop, so thiamine deficiency symptoms (nerve pain and swelling) would get worse.   Not eating carbs would improve symptoms because more Thiamine is available for nerves and muscles.  

A twenty percent increase in dietary Thiamine causes causes an eighty percent increase in brain function.  Then the brain can calm down all those nerve impulses and regulate body functions.  Good sources of Thiamine are meats and liver.  

I well remember that horrible sense of impending doom.  That you're having it concerns me.  I do hope you call your doctor very soon, today.  Beriberi, the name given thiamine deficiency means "I can't, I can't."  Thiamine deficiency causes leg pain so bad it hurts to walk and extreme fatigue.  Death can result.  Your heart is a muscle, too.  A medical doctor can administer Thiamine high dose intravenously.  Improvement is seen within minutes to hours.  It's cheap.  It's nontoxic.  There's no harm in trying.

Do make a phone call today to all your doctors and let them know how sick you are. Ask if they can do the blood draw early.  Ask for an in person examination to document that you are endangering your health on the gluten challenge.  Discuss Beriberi and Thiamine administration if only to rule it out.  

Best wishes.

[Vincent pemberton]

3 hours ago, knitty kitty said:

Hi, @Vincent pemberton, 

I experienced High Calorie Malnutrition, a thiamine deficiency disorder. 

The more carbohydrates we eat, we need an increased amount of Thiamine to process the carbs into energy.  For every 1000 calories, we need 1 mg more minimum.  Increased intake of carbohydrates for the gluten challenge definitely would require more Thiamine. 

Consuming carbs would cause the Thiamine that you do have left to drop, so thiamine deficiency symptoms (nerve pain and swelling) would get worse.   Not eating carbs would improve symptoms because more Thiamine is available for nerves and muscles.  

A twenty percent increase in dietary Thiamine causes causes an eighty percent increase in brain function.  Then the brain can calm down all those nerve impulses and regulate body functions.  Good sources of Thiamine are meats and liver.  

I well remember that horrible sense of impending doom.  That you're having it concerns me.  I do hope you call your doctor very soon, today.  Beriberi, the name given thiamine deficiency means "I can't, I can't."  Thiamine deficiency causes leg pain so bad it hurts to walk and extreme fatigue.  Death can result.  Your heart is a muscle, too.  A medical doctor can administer Thiamine high dose intravenously.  Improvement is seen within minutes to hours.  It's cheap.  It's nontoxic.  There's no harm in trying.

Do make a phone call today to all your doctors and let them know how sick you are. Ask if they can do the blood draw early.  Ask for an in person examination to document that you are endangering your health on the gluten challenge.  Discuss Beriberi and Thiamine administration if only to rule it out.  

Best wishes.

After reading your post, I messaged my doctor and they sent me in to do blood work, I asked for an entire vitamin screen along with it. I did buy some B1 and it helped tremendously, I did give blood before taking the vitamin to ensure accurate results. My doctor isn’t worried about me doing the gluten challenge, so I’m praying the celiac panel test shows something it wasn’t accurate last time because I was off gluten and IGA deficient. I can view all my old blood work online my WBC was always extremely high even when I was “healthy”, and other counts were high and low. I am not sure how my previous doctors could miss the signs that there was something off with me. The only time my WBC and other counts were normal was when I was gluten free. So I’m just praying I can figure this out now and if I can’t I know gluten free diet makes me feel so much better and I plan to stick to it. I really appreciate everyone’s help I’ll keep yall updated on the blood test when they come back.

[knitty kitty]

@Vincent pemberton,

I'm so glad you got the blood work done and have started taking the Thiamine!  

Isn't amazing how quickly Thiamine works!  Remember, all eight B vitamins work together.  Malabsorption can affect all the micronutrients, so a B Complex is a good idea. 

I had high WBC counts for years, too, and none of my doctors dug deep enough to figure out what was causing it, either.  They just happily wrote new prescriptions for my increasing symptoms and health problems.  

I'm interested in hearing the results of your vitamin panel and blood tests.  Do keep us posted! 

Such a relief you're feeling better! 

Cheers!

[Vincent pemberton]

Some of my blood work is back, my IGA was still deficient, and the rest of the celiac panel came back as being negative. 

[trents]

I'm not sure IGA deficiency ever changes. I think total IGA level is something that is innate to a person's immune system. So, if you have IGA deficiency it is likely your individual IGA antibody scores will never be trustworthy as diagnostic tools.

[Vincent pemberton]

3 hours ago, trents said:

I'm not sure IGA deficiency ever changes. I think total IGA level is something that is innate to a person's immune system. So, if you have IGA deficiency it is likely your individual IGA antibody scores will never be trustworthy as diagnostic tools.

Things can’t ever be easy can they, lol, sounds about right. I am going to get a genetic test done when I can. I don’t know much about my mom but I know she’s had a lot of health issues, I would ask her but I don’t know how to contact her or if she is even in the right state of mind. I am praying that even now that I am permanently gluten free they can still at least find something with the endoscopy. 

[Wheatwacked]

Regardless of the testing, I think you have adequately proven to yourself that you have gluten sensitivity.  If the endoscopy is negative,  that is at the least Non Celiac Wheat Sensitivity.  

Quote

NCWS is “a condition triggered by an adverse reaction to certain wheat components and characterized by gastrointestinal, namely irritable bowel syndrome (IBS)-like, symptoms, and by extraintestinal manifestations, occurring a few hours or days after the ingestion of foods made with gluten-containing cereals (ie, wheat, rye or barley).” (1) The symptoms resolve by avoiding these gluten-containing grains and return when the grains are rechallenged in the diet.  The diagnosis of NCWS comes after celiac disease and wheat allergy have been excluded using the appropriate testing. The scientific community is working to replace this diagnosis of exclusion with established biomarkers for NCWS.  Non-celiac gluten sensitivity (NCGS) or non-celiac wheat sensitivity (NCWS)

I wonder how much of NCGS (10% of the population vs. 1% are diagnosed Celiac) is the result of chromosones added modern Green Revolution hybridizing?  NCGS was first described in the early 1980s only ten years after Borlaug's Nobel Prize.  Experts estimated it is 80% of the world market.

Quote

Most of us are too young to remember, and those old enough will likely remember it only as a shining example of the wonders of modern science. But the world’s wheat crop was transformed in the 1950s and 60s in a movement called the “Green Revolution”. The father of the movement, Norman Borlaug, was awarded the Nobel Peace Prize, credited with saving one billion lives... According to Wheat Belly author Dr. William Davis, “this thing being sold to us called wheat—it ain’t wheat. It’s this stocky little high-yield plant, a distant relative of the wheat our mothers used to bake muffins, genetically and biochemically light-years removed from the wheat of just 40 years ago." Modern Wheat Issues