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ktb

gluten-free diet for ten years - negative serology - constant epigastric discomfort and nausea among other things

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Hi - my daughter was diagnosed with celiac disease at the age of three and has followed a gluten-free diet ever since. She is now 14. Recently she has been having epigastric discomfort and we thought she may have had a little gluten and just watched and waited however it’s now several weeks and she now also has constant nausea, feel shaky and fatigued. Loss of appetite. No changes to bowels. Coeliac serology is all very good. Just wondered if anyone has experienced this? We are booked to see her gastroenterologist in two weeks. 
should also note she also had full blood count done, kidney function, liver enzymes, and all normal. CRP was Mildly elevated. Also had abdominal ultrasound - normal. 
it’s like looking for a needle in a haystack! 

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Hi,

She may be reacting to something else in her diet.  There is a small percentage of us that react to oats like we do to wheat, rye and barley.  So if she is eating oats that would be something to remove from her diet for a few months to see if things improve. Another possible problem food is dairy.  Same thing, remove all dairy from her diet for a few months to see if things improve.

Beyond that some other common food problems are nightshades, soy, eggs, corn, nuts, fish and sometimes celery. carrots, etc etc.  We can develop an intolerance to any foods really.  This is assuming you have eliminated the possibility of gluten contamination first.

Troubleshooting a person's diet can be time consuming and difficult.  Especially if the person eats processed foods with many ingredients in them.  The simpler the diet the simpler the food problems are to find.

Edited by GFinDC

Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."

Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.

Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, eggplant, celery, strawberries, pistachios, and hard work. Have a good day! 🙂 Paul

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ktb,

Sorry your daughter isn't feeling well.  You're such a great Mom to seek answers!  Welcome to the forum.

All the symptoms your daughter is having are early signs of thiamine deficiency.  Be sure her doctor does the erythrocyte transketolase test to see if she's deficient.  Checking the levels of the other eight B vitamins would be a good idea because the symptoms can overlap.  

Thiamine is water soluble and can't be stored for very long.  Thiamine deficiency can occur in as little as two weeks.  It's usually the first vitamin to become deficient.

Thiamine is used up quickly during emotional stress, when physically active especially when outside in hot weather, when eating a high carbohydrate diet, and during illness.

Loss of appetite, nausea, feeling weak and shaky, and fatigue were the symptoms I experienced early on when I was deficient.  Thiamine is needed to turn carbohydrates, fats and proteins into energy.  I would tire quickly and was still tired after resting.  My muscles felt weak and shaky.  I had no strength.  I felt clumsy.  Thiamine is needed to produce digestive enzymes and insulin.  I started having upset stomach, high blood glucose levels, trouble swallowing, and delayed gastric emptying.  Thiamine is needed to provide energy for the nerves and the brain to function properly.  My toes started tingling. Sometimes my fingers felt numb.  I would drop things.  I experienced irritability, mood swings, and memory difficulties.  

Eating a high carbohydrate diet requires extra thiamine to process those carbs into energy.  Gluten free processed foods are not required to be enriched with vitamins like their gluten containing counterparts.  I gave up those gluten free empty calorie cookies! 

In my experience, the possibility of vitamin deficiencies never entered my doctors' heads.  I got much worse and developed other nutritional deficiencies before they caught on.  Vitamin and mineral deficiencies can occur on the gluten free diet, even if you don't get glutened.  A nutritionist or dietitian can be very helpful.  Periodically checking for vitamin and mineral deficiencies is part of follow up care for Celiacs.  Get all the vitamins and minerals checked!

I found this article about elevated CRP levels in thiamine deficient children.

https://academic.oup.com/ajcn/article/93/1/57/4597696

I hope your daughter feels better soon.  Please keep us informed.  

Hope this helps!

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Her celiac disease might be active.  Mine was the opposite.  My antibodies were very elevated the day I had my repeat endoscopy which revealed complete healing.  The celiac disease blood tests were meant to help diagnose celiac disease and not to monitor the gluten-free diet.  But it is the only non-evasive “tool-in-the-toolbox” for doctors to use.  Best to see the GI. Know that once you have one autoimmune disorder, you can develop more.  A GI consult can determine if she has something else (e.g. gallbladder issues, gastritis, etc.).  Gallbladder is a family curse in my case.  No stones.  Just non-functioning.  Need a HIDA scan to check for this.  Will not be caught on any image tests like ultrasound or CT.  

Let us know the outcome.  You could help another parent or child!  


Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test (DGP IgA only) and Endoscopy: March 2013

Hashimoto's Thyroiditis

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Repeat endoscopy/Biopsies: Healed

Celiac.com - Celiac Disease Board Moderator

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9 hours ago, GFinDC said:

Hi,

She may be reacting to something else in her diet.  There is a small percentage of us that react to oats like we do to wheat, rye and barley.  So if she is eating oats that would be something to remove from her diet for a few months to see if things improve. Another possible problem food is dairy.  Same thing, remove all dairy from her diet for a few months to see if things improve.

Beyond that some other common food problems are nightshades, soy, eggs, corn, nuts, fish and sometimes celery carrots, etc etc.  We can develop an intolerance to any foods really.  This is assuming you have eliminated the possibility of gluten contamination first.

Troubleshooting a person's diet can be time consuming and difficult.  Especially if the person eats processed foods with many ingredients in them.  The simpler the diet the simpler the food problems are to find.

Thanks for taking the time to reply GFinDC. We are fairly certain that her diet is not contaminated (but still it’s always a possibility). I guess the thing that puzzles us is that her bowel movements have not changed at all over the 6-8 weeks this has been happening and even closely watching what she eats has made not improvement in her symptoms. Gosh I hope it isn’t another item we have to eliminate (albeit that is a better outcome Than another autoimmune diagnosis on top of celiac disease). 
her diet hasn’t changed but perhaps she has become sensitive to something else.... I will start keeping a food diary I think and go back to basics with no more processed foods. Thanks again much appreciated 

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9 hours ago, knitty kitty said:

ktb,

Sorry your daughter isn't feeling well.  You're such a great Mom to seek answers!  Welcome to the forum.

All the symptoms your daughter is having are early signs of thiamine deficiency.  Be sure her doctor does the erythrocyte transketolase test to see if she's deficient.  Checking the levels of the other eight B vitamins would be a good idea because the symptoms can overlap.  

Thiamine is water soluble and can't be stored for very long.  Thiamine deficiency can occur in as little as two weeks.  It's usually the first vitamin to become deficient.

Thiamine is used up quickly during emotional stress, when physically active especially when outside in hot weather, when eating a high carbohydrate diet, and during illness.

Loss of appetite, nausea, feeling weak and shaky, and fatigue were the symptoms I experienced early on when I was deficient.  Thiamine is needed to turn carbohydrates, fats and proteins into energy.  I would tire quickly and was still tired after resting.  My muscles felt weak and shaky.  I had no strength.  I felt clumsy.  Thiamine is needed to produce digestive enzymes and insulin.  I started having upset stomach, high blood glucose levels, trouble swallowing, and delayed gastric emptying.  Thiamine is needed to provide energy for the nerves and the brain to function properly.  My toes started tingling. Sometimes my fingers felt numb.  I would drop things.  I experienced irritability, mood swings, and memory difficulties.  

Eating a high carbohydrate diet requires extra thiamine to process those carbs into energy.  Gluten free processed foods are not required to be enriched with vitamins like their gluten containing counterparts.  I gave up those gluten free empty calorie cookies! 

In my experience, the possibility of vitamin deficiencies never entered my doctors' heads.  I got much worse and developed other nutritional deficiencies before they caught on.  Vitamin and mineral deficiencies can occur on the gluten free diet, even if you don't get glutened.  A nutritionist or dietitian can be very helpful.  Periodically checking for vitamin and mineral deficiencies is part of follow up care for Celiacs.  Get all the vitamins and minerals checked!

I found this article about elevated CRP levels in thiamine deficient children.

https://academic.oup.com/ajcn/article/93/1/57/4597696

I hope your daughter feels better soon.  Please keep us informed.  

Hope this helps!

Thanks for your reply knitty kitty. Wow I had not thought of vitamin deficiency and the fact that they are not added to gluten-free foods like their non gluten-free equivalents. Your experience sounds awful! It certainly fits as a possibility - while she eats veges daily and doesn’t have a huge amount of processed foods especially recently - a vitamin deficiency would take time to resolve especially without supplementation. Think I’ll get her started on a supplement and see what happens. Thank you for your input much appreciated. 

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4 hours ago, cyclinglady said:

Her celiac disease might be active.  Mine was the opposite.  My antibodies were very elevated the day I had my repeat endoscopy which revealed complete healing.  The celiac disease blood tests were meant to help diagnose celiac disease and not to monitor the gluten-free diet.  But it is the only non-evasive “tool-in-the-toolbox” for doctors to use.  Best to see the GI. Know that once you have one autoimmune disorder, you can develop more.  A GI consult can determine if she has something else (e.g. gallbladder issues, gastritis, etc.).  Gallbladder is a family curse in my case.  No stones.  Just non-functioning.  Need a HIDA scan to check for this.  Will not be caught on any image tests like ultrasound or CT.  

Let us know the outcome.  You could help another parent or child!  

Hi cyclinglady thank you for taking the time to reply. My gut feeling (pardon the pun) is that it is active celiac disease too. 
I wondered about the use of the serology as an indicator of gluten-free diet success so that’s certainly something to keep in mind. 
my daughter keeps telling me it feels different to coeliac pain but perhaps it is just presenting different this time as she is a lot older and her perception and well as her body is now quite different from ten years ago. She has never really had a big flare up and anything she has ever experienced has been very minor and disappears within a day or two. 
I really appreciate you taking the time to reply as it gives me some things to look into. I would certainly prefer this to be a bout of active celiac disease and not another new diagnosis. Fingers  crossed 

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ktb, 

Do keep in mind that starting supplementing now will skew future tests for vitamin deficiencies.  Getting a baseline before beginning the supplements might be the better way to go, but considering the covid pandemic, going for proper testing may be undesirable.  At least a call to your daughter's doctor may be warranted.  Taking supplements before testing can artificially raise blood levels, thereby masking the deficiencies.  Supplements should not be taken for four to six weeks before testing. 

Yes, vitamin deficiencies don't occur overnight and can worsen over time.  Deficiencies do take months or years to resolve on their own if ever, especially if one is unaware that a deficiency exists.  Special attention to one's diet is required.  A call to a nutritionist might be helpful.

Here are reviews of studies done about vitamin deficiencies on a long-term gluten free diet. 

In children.....

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6683263/#!po=11.8750

In children and adults.....

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6681258/

Some of the studies reviewed only checked on a few select vitamins.  Blood tests for vitamin deficiencies are not always reliable because the vitamins are utilized inside the cells of organs and tissues.  Because the body tries to keep a certain amount of vitamins in the blood stream to feed the brain, the organs and tissues where they are utilized are often depleted.    

Doctors often under value the importance of vitamins and minerals.  They did in my case, so I try to use my awful experiences as a way to enlighten others.  I will be so pleased if my story can help your daughter.  Keep us posted on her progress!

Knitty Kitty

 

2 hours ago, ktb said:

Thanks for your reply knitty kitty. Wow I had not thought of vitamin deficiency and the fact that they are not added to gluten-free foods like their non gluten-free equivalents. Your experience sounds awful! It certainly fits as a possibility - while she eats veges daily and doesn’t have a huge amount of processed foods especially recently - a vitamin deficiency would take time to resolve especially without supplementation. Think I’ll get her started on a supplement and see what happens. Thank you for your input much appreciated. 

 

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On 7/29/2020 at 10:46 AM, knitty kitty said:

ktb, 

Do keep in mind that starting supplementing now will skew future tests for vitamin deficiencies.  Getting a baseline before beginning the supplements might be the better way to go, but considering the covid pandemic, going for proper testing may be undesirable.  At least a call to your daughter's doctor may be warranted.  Taking supplements before testing can artificially raise blood levels, thereby masking the deficiencies.  Supplements should not be taken for four to six weeks before testing. 

Yes, vitamin deficiencies don't occur overnight and can worsen over time.  Deficiencies do take months or years to resolve on their own if ever, especially if one is unaware that a deficiency exists.  Special attention to one's diet is required.  A call to a nutritionist might be helpful.

Here are reviews of studies done about vitamin deficiencies on a long-term gluten free diet. 

In children.....

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6683263/#!po=11.8750

In children and adults.....

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6681258/

Some of the studies reviewed only checked on a few select vitamins.  Blood tests for vitamin deficiencies are not always reliable because the vitamins are utilized inside the cells of organs and tissues.  Because the body tries to keep a certain amount of vitamins in the blood stream to feed the brain, the organs and tissues where they are utilized are often depleted.    

Doctors often under value the importance of vitamins and minerals.  They did in my case, so I try to use my awful experiences as a way to enlighten others.  I will be so pleased if my story can help your daughter.  Keep us posted on her progress!

Knitty Kitty

 

 

Hi Again Knitty kitty

Thanks again. Thanks for the suggestion, I will wait until we see her gastroenterologist before changing anything. Its hard to watch her so uncomfortable and I think I just want to fix it, but yes your suggestion to wait is a good one. We were lucky enough to get an appointment with her GI specialist for the 11th - this was the specialist that did her original scope and made the official diagnosis when she was 3. Hopefully there is a simple solution and nothing nasty hiding waiting to be discovered. We also had her pancreatic enzymes checked and they are normal. Only test pending now is a stool sample. Her GP also doubled her PPI dose until she visits the specialist. She was on 20mg pantoprazole and has now moved to 40mg. Still no change. Its a waiting game now. Thanks again for your input it helps me to keep things in perspective. 

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ktb, 

I wonder if getting an erythrocyte transketolase test now would be possible.  It's a special test for thiamine deficiency which is one of the vitamins most rapidly lost.  

I'm also concerned about the increased dosage of the proton pump inhibitors...

And another article...

https://pubmed.ncbi.nlm.nih.gov/28220520/

My heart goes out to you both having to wait so long! 

I hope this helps!

Edited by knitty kitty
Typo

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16 minutes ago, knitty kitty said:

ktb, 

I wonder if getting an erythrocyte transketolase test now would be possible.  It's a special test for thiamine deficiency which is one of the vitamins most rapidly lost.  

I'm also concerned about the increased dosage of the proton pump inhibitors...

And another article...

https://pubmed.ncbi.nlm.nih.gov/28220520/

My heart goes out to you both having to wait so long! 

I hope this helps!

I think the GP wanted to trial the PPI originally as a lot of her sypmtoms to point towards GORD (or PUD - however breathe test since then was negative). Given that there was no response,  the trial of increased dose until specialist visit is really just to test if there is any response to reducing acid. I certainly don't want her on high dose PPI long term but if it can give us some diagnostic information, even if just to rule some things  out at this stage Im ok with that for now. Ill check in with the gastro regarding the B12 levels. thnx 🙂

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I'm not familiar with PUD.  What does that stand for?  

I found a small drink of water every couple of bites while eating a meal helpful.   

Leaning to the left after eating is helpful in getting food to go down.  It's the anatomy of the body.  The stomach and small intestine drain off to the left.  

A cup of non caffeinated tea (or plain hot water) after a meal might help.  

Wish I could see her food diary!  

Is she eating any nightshades (tomatoes, potatoes, peppers, and eggplants)?  Dairy? Processed foods?

Keep us posted.  I hope she feels better! 

 

 

Edited by knitty kitty
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On 7/28/2020 at 4:19 AM, ktb said:

Hi - my daughter was diagnosed with celiac disease at the age of three and has followed a gluten-free diet ever since. She is now 14. Recently she has been having epigastric discomfort and we thought she may have had a little gluten and just watched and waited however it’s now several weeks and she now also has constant nausea, feel shaky and fatigued. Loss of appetite. No changes to bowels. Coeliac serology is all very good. Just wondered if anyone has experienced this? We are booked to see her gastroenterologist in two weeks. 
should also note she also had full blood count done, kidney function, liver enzymes, and all normal. CRP was Mildly elevated. Also had abdominal ultrasound - normal. 
it’s like looking for a needle in a haystack! 

Ktb,

I have been staying out of this thread.....I have had other life issues come up...

I could of been your daughter as a teenager.....I do a lot of deep research....mainly in the beginning to find out what was wrong with me that the doctor's couldn't figure  out.

It has been a long and winding road....but slowly I began to finally put all the pieces together.

Your daughter might have a Vagus Nerve disorder....

https://www.md-health.com/Vagus-Nerve.html

I winds through your body (thus it's name) as it does this it helps regulate the PNS....

See this diagram that shows all the organs a Vagus Nerve disorder can effect....

https://en.wikipedia.org/wiki/File:1503_Connections_of_the_Parasympathetic_Nervous_System.jpg

When acteylcholine gets low our Vagus doesn't work properly which effects our GI tracts natural contractions....and soon nausea, loss appetite and bowel problems show up....

Leading in time to gastroparesis....because our body can no longer control the peristaltic action (wave like motion of bowels) that moves food along our GI tract...

Taking some Lecithin granules with breakfast could help your daughters acetylcholine levels leading to a more regular movement.

See this article about Lecithin aka PC that shows how Lecithin has been shown to help IBD...

https://www.sciencedirect.com/topics/neuroscience/lecithin

I will quote the section/article on IBS/IBD of the thread that is most relevant.....so If it doesn't help you....it  might help someone else....and so you won't have to read the whole sciencedirect article to find the relevant parts... quoting

"Inflammatory Bowel Disease

Alyssa M. Parian MD, ... Amy C. Brown PhD, in Integrative Medicine (Fourth Edition), 2018

Phosphatidylcholine

Phosphatidylcholine (PC) is an important component of the mucosal layer of the colon and acts as a surfactant within the mucus to create a hydrophobic surface to prevent bacterial penetrance. PC levels have been found to be reduced in the colon of UC patients compared to controls.160,161 Without adequate PC in the mucosa, the intestinal barrier is permeable to colonic bacteria, leading to chronic intestinal inflammation and barrier defects.161-164 Four human trials have been performed to determine the efficacy of PC in the treatment of UC. Two studies on patients with chronic active UC have reported clinical, endoscopic, and histological improvements.165,166 Steroid-refractory UC patients were more successful in weaning off steroids when treated with PC compared to placebo (P < 0.01).167 A double-blinded, randomized, placebo-controlled, multicenter study found that 3.2 g daily of PC improved clinical activity scores, histological remission, and relapse rates without any significant adverse events.168"

I have used Lecithin myself.....it can also help with having a clear mind....because acetylcholine is also used in the CNS.  I typically took it as capsules....but granules work fine for most people sprinkled over breakfast and how it usually taken.  I do not use it now....but I found my mind felt sharper when I was taking Lecithin...

I hope this is helpful but it is not medical advise.

2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included.

Posterboy by the grace of God,

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8 hours ago, knitty kitty said:

I'm not familiar with PUD.  What does that stand for?  

I found a small drink of water every couple of bites while eating a meal helpful.   

Leaning to the left after eating is helpful in getting food to go down.  It's the anatomy of the body.  The stomach and small intestine drain off to the left.  

A cup of non caffeinated tea (or plain hot water) after a meal might help.  

Wish I could see her food diary!  

Is she eating any nightshades (tomatoes, potatoes, peppers, and eggplants)?  Dairy? Processed foods?

Keep us posted.  I hope she feels better! 

 

 

PUD - peptic ulcer disease (commonly caused by H. Pylori infection).

We are keeping a strict eye on her diet at present (with regards to gluten) however not cutting other things out until we see the specialist. Will certainly keep your suggestions in mind. Thank you

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5 hours ago, Posterboy said:

Ktb,

I have been staying out of this thread.....I have had other life issues come up...

I could of been your daughter as a teenager.....I do a lot of deep research....mainly in the beginning to find out what was wrong with me that the doctor's couldn't figure  out.

It has been a long and winding road....but slowly I began to finally put all the pieces together.

Your daughter might have a Vagus Nerve disorder....

https://www.md-health.com/Vagus-Nerve.html

I winds through your body (thus it's name) as it does this it helps regulate the PNS....

See this diagram that shows all the organs a Vagus Nerve disorder can effect....

https://en.wikipedia.org/wiki/File:1503_Connections_of_the_Parasympathetic_Nervous_System.jpg

When acteylcholine gets low our Vagus doesn't work properly which effects our GI tracts natural contractions....and soon nausea, loss appetite and bowel problems show up....

Leading in time to gastroparesis....because our body can no longer control the peristaltic action (wave like motion of bowels) that moves food along our GI tract...

Taking some Lecithin granules with breakfast could help your daughters acetylcholine levels leading to a more regular movement.

See this article about Lecithin aka PC that shows how Lecithin has been shown to help IBD...

https://www.sciencedirect.com/topics/neuroscience/lecithin

I will quote the section/article on IBS/IBD of the thread that is most relevant.....so If it doesn't help you....it  might help someone else....and so you won't have to read the whole sciencedirect article to find the relevant parts... quoting

"Inflammatory Bowel Disease

Alyssa M. Parian MD, ... Amy C. Brown PhD, in Integrative Medicine (Fourth Edition), 2018

Phosphatidylcholine

Phosphatidylcholine (PC) is an important component of the mucosal layer of the colon and acts as a surfactant within the mucus to create a hydrophobic surface to prevent bacterial penetrance. PC levels have been found to be reduced in the colon of UC patients compared to controls.160,161 Without adequate PC in the mucosa, the intestinal barrier is permeable to colonic bacteria, leading to chronic intestinal inflammation and barrier defects.161-164 Four human trials have been performed to determine the efficacy of PC in the treatment of UC. Two studies on patients with chronic active UC have reported clinical, endoscopic, and histological improvements.165,166 Steroid-refractory UC patients were more successful in weaning off steroids when treated with PC compared to placebo (P < 0.01).167 A double-blinded, randomized, placebo-controlled, multicenter study found that 3.2 g daily of PC improved clinical activity scores, histological remission, and relapse rates without any significant adverse events.168"

I have used Lecithin myself.....it can also help with having a clear mind....because acetylcholine is also used in the CNS.  I typically took it as capsules....but granules work fine for most people sprinkled over breakfast and how it usually taken.  I do not use it now....but I found my mind felt sharper when I was taking Lecithin...

I hope this is helpful but it is not medical advise.

2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included.

Posterboy by the grace of God,

Thanks Posterboy for taking the time to reply. I will have a read of those links they look interesting. Thank you again I really appreciate it.

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Her gastro and PCP docs recommendations, exams will be key in helping get to the source.  They may want to do endoscopy "just to be on the safe side".  You might consider whether her symptoms might have been triggered by anxiety or insomnia or some other issue in her life.  Emotional issues can often be bigger triggers of GI distress than other things like food allergies or celiac disease, esp. for teenagers who are a bundle of nerves, understandable in these days of pandemic/school safety.   Also, I know it's hard to wait 2 weeks to see a doctor, but probably best to not expect answers or guidance in comments from laymen on blogs. Most comments here tend to be "all over the map" ...

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On 8/5/2020 at 12:59 PM, Kate333 said:

Her gastro and PCP docs recommendations, exams will be key in helping get to the source.  They may want to do endoscopy "just to be on the safe side".  You might consider whether her symptoms might have been triggered by anxiety or insomnia or some other issue in her life.  Emotional issues can often be bigger triggers of GI distress than other things like food allergies or celiac disease, esp. for teenagers who are a bundle of nerves, understandable in these days of pandemic/school safety.   Also, I know it's hard to wait 2 weeks to see a doctor, but probably best to not expect answers or guidance in comments from laymen on blogs. Most comments here tend to be "all over the map" ...

Hi Kate333,

My medical advice will always be from the medical practitioners or with the practitioners permission.

Reaching out in this forum is a means of speaking with other people that may or may not have experienced similar issues. As a parent with a sick child I want to be 'doing' something to find answers and ideas. I actually have a medical background myself so can read plenty of theory however what I am interested in is patient experience and I can find that here from people that are willing to share. Likewise perhaps our story may help another. Sometimes its the comfort of knowing what your child is experiencing is not 'all in her head' like some medical practitioners have suggested (not in those exact words). We have considered the anxiety channel however it doesn't fit the symptom timeline etc

Thanks for your reply

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I hope the endoscopy goes well! :)


Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."

Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.

Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, eggplant, celery, strawberries, pistachios, and hard work. Have a good day! 🙂 Paul

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7 hours ago, GFinDC said:

I hope the endoscopy goes well! :)

Hi GFinDC 

no endoscopy at this stage. Our visit with the gastro was yesterday. He was extremely happy with her coeliac serology (all levels less than 1). At this stage he has asked for repeat abdominal ultrasound and repeat of blood - esp thyroid (incl antibodies). Even though bowel habits haven’t changed we are trialing osmotic laxative and trying to increase fibre on the chance it may be constipation From higher up the GI tract. Would be great if it was something so simple. Heading for ultrasound as bloods this morning. 
 

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On 7/31/2020 at 6:25 PM, ktb said:

I think the GP wanted to trial the PPI originally as a lot of her sypmtoms to point towards GORD (or PUD - however breathe test since then was negative). Given that there was no response,  the trial of increased dose until specialist visit is really just to test if there is any response to reducing acid. I certainly don't want her on high dose PPI long term but if it can give us some diagnostic information, even if just to rule some things  out at this stage Im ok with that for now. Ill check in with the gastro regarding the B12 levels. thnx 🙂

Ktb,

Be aware there is an over utilization of PPIs today.

Here is some research about it entitled "Overutilization of proton-pump inhibitors: what the clinician needs to know"

https://pubmed.ncbi.nlm.nih.gov/22778788/

Even short term use of PPIs can cause "Rebound Symptom's" locking in their use.

See these links....maybe it will help you.

https://www.webmd.com/heartburn-gerd/news/20090702/stopping-ppis-causes-acid-reflux-symptoms#1

https://www.foxnews.com/health/gerd-or-nerd-new-type-of-heartburn-doesnt-respond-to-drugs

The commonly held believe that the "average" GI user needs to take PPIs....was debunked more 15+ years ago....and note the NERD kind doesn't respond to PPIs in the first place....locking people into taking them long term...

quoting the article on the difference between NERD and GERD

"Gastrointestinal experts now estimate that 50 percent to 70 percent of GERD patients actually have NERD, and studies show they are more likely to be female—and younger and thinner—than typical acid-reflux sufferers."

HHMI figured this out....about how low stomach is the real cause....going misdiagnosed as high stomach acid instead over 15 years ago...

https://www.hhmi.org/news/excessive-growth-bacteria-may-also-be-major-cause-stomach-ulcers

Yet PPI's are still commonly used today as a first line medicine...often locking people into taking them for years......unnecessarily.....because they trigger rebound heartburn....even when used for a short period of time.

I must quit for today....this is all the time I have tonight.

I hope this is helpful but it is  not medical advise.

Posterboy,

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On 8/11/2020 at 5:18 PM, ktb said:

Hi GFinDC 

no endoscopy at this stage. Our visit with the gastro was yesterday. He was extremely happy with her coeliac serology (all levels less than 1). At this stage he has asked for repeat abdominal ultrasound and repeat of blood - esp thyroid (incl antibodies). Even though bowel habits haven’t changed we are trialing osmotic laxative and trying to increase fibre on the chance it may be constipation From higher up the GI tract. Would be great if it was something so simple. Heading for ultrasound as bloods this morning. 
 

Low gliaden antibodies sounds good KTB! :)   Something must be going right with her diet for them to be that low.  Hopefully the additional testing will help.  I am not sure that they have good tests for some of the additional food intolerances that can crop up.  Those are best found by elimination diets it seems.  Lactose intolerance is one they can test for and I think fructose intolerance and something else.  All this food problems stuff can take time to figure out.  Myself I did at least 5 different food elimination diets over the years.  They do work but you need patience for them to work.  if that's that cause that is.


Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."

Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.

Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, eggplant, celery, strawberries, pistachios, and hard work. Have a good day! 🙂 Paul

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