Need Advice, Please!

[BeccaMeadows]

This is similar to what I went through.

 

Look into adrenal function as well as the thyroid like others have suggested.  All the endocrine glands work with one another. 

 

I used to faint a lot from low blood pressure and was put on a medication called Midodrine.  That really helped and haven't fainted for a really long time now.  Increasing salt intake was also recommeded to myself to help increase my blood pressure.  Considering her body is under a lot of stress right now, it's considerable it's more than low blood pressure causing these fainting spells though. 

 

As well, try a naturopath.  Some of the stuff seems like quack science, but from what I have experienced recently, I am up for anything that actually works.  Started IV Therapy which basically overloads the body with vitamins directly into the bloodstream, so it bypasses the gut to rely on absorption.  After accidentally glutening myself for 3 months straight and getting really sick, this has been really helpful.  If your daughter is having problems with absorption, this may be a good alternative.  Some other things which help me includes digestive enzymes, evening primrose oil, adrenal support and vitamin D3. 

 

Another thing which I found helpful is not eating anything pre-made or processed foods.  After a few incidences with "gluten-free" products, switching to making things at home has been so helpful.  Knowing exactly what is being consumed is helpful in ensuring minimal chances of cross contamination. 

[Niks]

Thank you Becca.  She generally doesn't eat processed food.  Her GP called her this morning, she has low ferritin levels, he is going to prescribe some iron.  I guess that could something to do with her constant tiredness and fainting!

[stanleymonkey]

Have they done a stool sample to check for intestinal bleeding? That's the first thing they did for my 2 yr old

[Niks]

I remember one stool test, but not sure what that was testing for in hospital, this was way back x

[cyclinglady]

All good suggestions and ideas about your daughter's health problems!

 

 I'm famous for passing out and it started as a young child.  Looking back, I can attribute it to our family curse of non-functioning gallbladders.  Most suffered on and off for years.  Doctors were always perplexed.  Mine was only removed when it became infected and finally stopped working entirely.   I also have many food intolerances that were identified long before I was diagnosed with celiac disease.  Dairy is at the top of the list.  Consuming a lot of dairy, eating fatty foods or eating too much (this was always my case) would  cause the gallbladder attack.  Pain would be so severe that I'd faint.  Neuro doc said that the fainting was just a genetic thing, as I would pass out in extreme heat, high elevations, etc.  Nothing really wrong there.  Vomiting and diarrhea always followed.  I would also get constipated from the dairy. 

 

A HIDA scan identified my non-functioning gallbladder as I never had stones. 

 

I hope this helps.

[BeccaMeadows]

Be sure she is taking the iron pills with something like orange juice.  Iron needs vitamin C to be used by the body. 

 

Also, it is my suggestion to get more blood tests after a bit to test for iron levels again.  If it hasn't risen sufficiently ask your physician about alternatives like iron transfusions in case it's because of malabsorption. 

[nvsmom]

have they checked her for postural hypotension? I get faint when I stand up because my blood pressure plummets, and it has been like that since my teen years.  It is an issue with the adrenals and not enough corticosteroids (I believe).

 

To check it, have her lie down a few minutes and take her blood pressure, then have her stand up and take her blood pressure immediately. In most people, blood pressure goes up when standing, for me it dropped.

[Niks]

Thank you all for your advice and thoughts. 

. 

 

Her thyroidTSH is normal 1.0 (0.35 - 6.9 normal)

Ferritin only 12 (30-300 normal)

B12 normal 262

 

I have googled and researched a lot and I really don't think that just a low ferritin level would cause the fainting?  She has iron supplements, will get her to take them with Orange Juice (thanks Becca) .  No one told us this, when it was prescribed!

 

nvsmom - I can't recall anyone checking BP from sitting to standing, that would be worth doing.

 

I think that she may need to see another specialist over the fainting as I do not think this is coeliac/gastro related

[AlwaysLearning]

That B12 level isn't all that great. I just got a copy of some tests I had done and this is the verbiage the lab supplied about B12 levels.

"Please note: Although the reference range for B12 is 200-1100 pg/mL, it has been reported that between 5 and 10% of patients with values between 200 and 400 pg/mL may experience neuropsychiatric and hemotologic abnormalities due to occult B12 deficiency; less than 1% of patients with values above 400 pg/mL will have symptoms."

But really good to see that they are up from 67!

My personal goal is to get mine up to at least 700. I don't yet have the results back from my most recent bloodwork to see how well the sublingual tablets are doing.

My concern is always that I've overdone it because I don't like popping pills though my gastroenterologist says that it is really difficult to overdo B12 because it is water soluble. But the only gluten-free tablet I found in my stores was a huge does though more reading tells me that we only absorb 10% of what is in the sublingual tablets ... but still.

From my research into B12 deficiencies, I also ran across plenty of information about it damaging nerves, some of which may not be reversible. I backed off of my B12 supplements when I started getting tingling sensations in my digestive system and got the B12 retested. I'm hoping that was a sign of nerve damage healing because I have remained pain free since I started supplementing the B12, and that was after 6 years of abdominal pain. 

That said, milk is next on my list for doing some trial and error self testing to see if it is also causing problems for me.

[Niks]

Always Learning, thank you for this.

 

She did have B12 jabs back in March.  This must have boosted levels, so my guess is that they are dropping again.  I think we need to talk to GI about this and see what he thinks.  She had really bad symptoms when it was really low and is not showing any of them yet! 

[GFinDC]

Hi Niks,

About the diary, yes, it can cause bleeding.  It does for me.  There is a condition called casein sensitive enteropathy.  She may have that.  In celiac disease our gut become inflamed and sensitive, and that can lead to them becoming sensitized to many different foods.  Some of the commoner ones are nightshades, dairy, soy corn, eggs.  Food intolerances (IgG and IgA reactions) are  different from food allergies (IgE reaction), so testing for food allergies will not show them.  There aren't many test for food intolerances even though they can cause many severe symptoms.

The best way to find out if a food is causing a problem is to reduce the number of foods eaten to a bare minimum, perhaps 5, for a week, and then add one test food for a week and see what happens.  You have to add foods slowly to see how they affect the gut.  Eating just 5 foods for a week may be boring, but it simplifies the elimination diet process.  Many people eat hundreds of different food ingredients in a week and they have no way of knowing what ones are the problem without eliminating them.

It is possible to have both Crohn's and celiac.  I hope that's not her situation.

Inflammation and damage from celiac can cause the gut to kind of freeze up and not move.  Think about the last time you over-exercized.  I bet you didn't want to move those muscles for a while.

Some things that may help her digestion are pro-biotics, digestive enzymes and Betaine HCL.  She should also take vitamin and mineral supplements. All gluten-free, casein-free and soy-free of course (GFCFSF).  There are celiacs who take a B-12 supplements even years after diagnosis.

This Crohn's forum has lots of good info and helpful friendly people too.

Open Original Shared Link

Some Crohnie's find daily psyillium husks helpful.  Some say LDN (low dose Naltroxen) is helpful too.  Often doctors tell Crohn's patients not to restrict their diets or worry about what they eat since diet changes don't always help the symptoms.  But with celiac disease thrown in the mix it does matter very much what she eats.  And some Crohnies find diet very important to their symptoms.

A whole foods diet cooked at home is a great way to control what food triggers she is ingesting.  She may feel restricted by that but once she figures out her food triggers she will have the knowledge to be safer eating out of the house.

Here's some boilerplate tips/info.  I know some of it doesn't apply.

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.
Get your vitamin/mineral levels tested also.
Don't eat in restaurants
Eat only whole foods not processed foods.
Eat only food you cook yourself, think simple foods, not gourmet meals.
Take probiotics.
Take gluten-free vitamins.
Take digestive enzymes.
Avoid dairy.
Avoid sugars and starchy foods.
Avoid alcohol.

Helpful threads:

FAQ Celiac com
https://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101
https://www.celiac.com/forums/topic/91878-newbie-info-101/

What's For Breakfast Today?
https://www.celiac.com/forums/topic/81858-whats-for-breakfast-today/

[bartfull]

Hey Fartypants! It's good to see you! I was about to send out a search party. I hope you were away on vacation and having a wonderful time, but I'm glad you're back.

[Niks]

GFinDC - Thank you for all your input here. My concern is that she has more than coeliac disease and things just seem to be getting worse for her.  I am a member of crohnsforum.com !  And yes they are amazing people with lots of experience and ideas.  I came here because I was thinking there maybe something we were missing with the Coeliac Disease.

 

When my daughter moved hospitals they queried the Coeliac diagnosis  but she has stayed gluten free.  I think she does have Coeliac although none of her bloods ever came back positive.  Biopsies were clear on the last scope back in March, but she had been Gluten Free for nearly 4 months.  However her symptoms were worse than ever!

 

She is VERY reluctant to restrict her diet anymore as going gluten free has made NO difference.  Being 19 I cannot control what she eats!  I do think she needs referring to another specialist other than gastro as her fainting is getting worse.  Her abdo pain is also severe every day!  :-/

[GFinDC]

 

 

 

Hi Bartful,

Yes, I wandered in.  Been out and about a little but will be back here some anyway.  I am trying to get my house ready to sell and then move.

 

 

Hi Niks,

I have celiac disease, my younger brother had Crohn's disease.  So they are at least somewhat related genetically.  I am glad you found the Crohn's forum, they are a great bunch of people.  Not that the peeps here are any less so.  But they do have a more "loose" sense of humor I think.  That's ok tho.  I understand she isn't diagnosed with Crohn's, it's just another possibility they are considering at the moment.

I guess I just can't understand young people not wanting to change / restrict their diet though.  Just kidding!   It took me quite a few elimination diets before I got past my symptoms.  It seems like some food reactions developed after I had gone gluten-free.  For a while I was doing an elimination diet once a year, and always finding something new that caused reactions.  Now I am slowly testing foods I had eliminated previously to see if I can tolerate them in small doses.  Sometimes that happens, people get their guts healed up and then can tolerate foods that were a problem before.  Maybe not an unlimited amount of the food, but at least some.

When we are new to the gluten-free diet, it seems like many foods will cause reactions, probably because our guts are not healed up yet and are still sensitive.  Plus the immune system reaction takes time to slow down and stop attacking.  And even a very small amount of gluten can cause it to flare back up again, like kissing a boyfriend who just ate a cheeseburger.  Using a toaster that is also used for regular bread, drinking a regular beer etc.  Just looking at cookies is bad.  Ok, kidding on that last one.

Some things that may help her pain are Pepto Bismol or anything that coats the gut.  Things like okra or marsh mallow that are muscillagenous.  Stomach gas can be helped by avoiding sugary and starchy foods.  Peppermint is helpful for getting gas out of the stomach.

It may seem hard to her to do an elimination diet now, but it may save her months or years of suffering.  It's important to help heal the gut, by not eating foods that are hard to digest or irritating.  Hot peppers for instance, would be a bad idea.  If she thinks about how a scraped knee feels, that may help her understand.  People put bandages on scraped knees, but we can't do that in our gut.  So we have to treat them gently to let them heal.  The small intestine has around 22 feet in length, and the surface area of about a tennis court.  An endoscopy only reaches the first 5 feet of that.  So there is plenty of unexplored gut.  That's a lot of scraped knee to heal.  

I am not an expert on Crohn's at all, but I know some people with celiac and Crohn's have problems with digesting raw green veggies sometimes.  So it might help her to stick to cooked veggies.  Sweet potatoes are more nutritious than white potatoes, and they aren't nightshades, so are a better choice.  Nightshades have alkaloids and other chemicals in them that bother many people.

I had some improvement in my symptoms within a week of going gluten-free.  But then things seemed to go kind of backwards.  It took years to get rid of the majority of my symptoms.  It was kind of a back and forth process over that time.  It helps to develop a little patience with the body.

 

You are right, you can't control what she eats. She is going to have to do that herself.  At some point food can become somewhat of an enemy to people with digestive conditions.  The reality is that some of us just plain can't eat what other people eat.  And people are kind of conditioned to eat certain foods by advertising and peer pressure etc.  After a while on the gluten-free diet, I think it becomes easier to eat "right".  Foods that used to seem really good instead can seem kind of yucky and undesirable.  Plus there are many gluten-free food products on the shelves now.  Most things like pizza, beer, donuts etc are available in gluten-free versions.  The trick is not to over eat those gluten-free processed foods.  They usually have more calories than their gluteny counterparts and are less nutritious.  It's all a matter of time to adjust to a new diet.  Learning to eat whole foods and mostly grain free is different, but it has advantages.  There is much less junk in whole foods.  Things like food preservatives, food colorings, stabilizers, homogenizers, textureizers, etc are noticeably lacking.  Which is good.  That's all stuff your gut and liver don't have to process and remove from you body.  I think it's good to stick with foods that have 3 ingredients or less when starting out.  Giving the body a rest from all those chemicals is not bad thing.

[Niks]

Thanks again GFinDC.  Her GP has prescribed Prednisolone again and the bleeding is much worse and she is fainting pretty much everytime she has a BM.  GRRRR.  We can't get hold of hospital so she really doesn't know whether or not to start steroids. 

[GFinDC]

Thanks again GFinDC.  Her GP has prescribed Prednisolone again and the bleeding is much worse and she is fainting pretty much everytime she has a BM.  GRRRR.  We can't get hold of hospital so she really doesn't know whether or not to start steroids. 

Hi Niks,

 

The way I understand it, Crohnies generally go on steroids for a variable period of time until things are healed up and stabilized.  Then they may be able to go off them for a while, or may try a different drug.  Crohn's can affect certain areas of the gut and not affect others.  So a certain area might get repeated damage and eventually have to be removed.  Celiacs don't generally need to go on steroids for very long if they are following the gluten-free diet.  But with Crohn's it is different.  People with Crohn's are often on steroids for months to years at a time.  There is lot of research being done on drugs to treat Crohns.

 

There is a version of celiac disease called refractory celiac disease (RCD).  In RCD the immune system doesn't stand down after gluten is removed from the diet.  It keeps on attacking.  So people have ongoing problems like in Crohn's.  In Crohn's and RCD one possible treatment is enteral feeding with a non-irritating food.  People use feeding tubes and pumps to control the feeding at night while they sleep. That way they can remove them during the day and move around freely.  Pretty slick!

 

Nutrients are absorbed in the small intestine, so it is important for Julie to stay on her gluten-free diet even if she doesn't feel symptoms relief.  If she can't absorb nutrients due to celiac villi damage it will be difficult for her body to heal.  Plus if she does have Crohn's also it is better to stick with gluten-free so the immune system will be less stimulated.  Vitamin pills are not as easy to absorb as nutrients from food.  Some people say that bone broths are good for nutrition because their vitamins and minerals are in a natural organic version and easier to absorb.  There are some threads about bone broths on this forum.

 

I hope she feels better soon and I will pray for her.

[Niks]

Got hold of GI today.  He wants her to stop Iron Supplements and is getting her to have an Iron Infusion instead, he is worried that it will make constipation worse, although that isn't a problem at the moment!

 

He wants full bloods done and possible Sigmoidoscopy, he has made an appointment for her next Tuesday at Gastro Clinic, so will discuss again there.

 

He also thinks she needs to be referred to another specialist regarding her fainting. 

 

GFinCD - She hasn't been diagnosed with an IBD!  Her last biopsy (4 months gluten-free) was completely clear, showing no damage at all.  I am so confused by it all! 

[mommida]

My daughter has Celaic and Eosinophilic Esophagitus.  There is now a proven connection between the 2 disorders.

 

My daughter was 1st diagnosed with Celiac at the age of 16 months. (usual Celiac symptoms with vomitting ~ normal for toddlerswith Celiac)

EoE diagnoses when she was 6 years old. It really seemed like she was getting glutened.  Vomitting up to 5 times a day, constipation, headaches, would say her whole stomach hurt (children do not describe as isolated to the throat area for eosinophilic esophagitus), her hair was falling out, exhaustion, and all Celiac type symptoms were back.

When she went in for testing they had to rule out other illnesses and disorders like H. Ployri., congenital defect, parasite infection, and others.

 

She was not fainting.  She was exhausted and malnourished.  She did need to be hospitalized for vommitting blood and a vomit cycle that would require an IV for dehydration as she could not keep anything down.

 

There is a type of nuerological issue for teenagers (puberty) and fainting.  I can not recall the exact name but as the boy's mother explained it " the body has a bit of a temper tantrum and demands more energy/ blood flow.  The brain just refuses to send any more and shuts down.  Her son has it and it took months of testing his heart and other functions.  (common testing is for POTS)  The doctor that diagnosed the condition is an nuerologist.  Very serious condition, and needs to be tested immediately!

 

I have no advice except for GET BACK TO THE DOCTORS and find out what you are dealing with.  You are right, your child can have more than just Celiac happening.  The doctors tend to blow you off when some symptoms are just too close to Celiac; when they are already diagnosed with Celiac.

 

Sorry for the delay in answering..  It has been a busy summer.  Fair, baseball, and vaction time.

[mommida]

EGID  Eosinophilic Gastrointestinal Disorder  (all eosinophilic involvment of damage anywhere in the GI tract)

 

Eosinophils are "triggered" by an "allergen" (food or airborne).  Eosinophils are the nastiest line of defense of our immune systems.  They are usually reserved for parasites because the have a spearlike attack.  Eosinophils can not distinguish between normal tissue and what "triggered" it to attack.  Once activated, eosinophils remain active and causing damage for up to 12 days.

 

If any sample was taken from the GI tract, it would NOT have been tested, unless the doctor requested specific testing for eosinophil count.

[Niks]

EGID  Eosinophilic Gastrointestinal Disorder  (all eosinophilic involvment of damage anywhere in the GI tract)

 

Eosinophils are "triggered" by an "allergen" (food or airborne).  Eosinophils are the nastiest line of defense of our immune systems.  They are usually reserved for parasites because the have a spearlike attack.  Eosinophils can not distinguish between normal tissue and what "triggered" it to attack.  Once activated, eosinophils remain active and causing damage for up to 12 days.

 

If any sample was taken from the GI tract, it would NOT have been tested, unless the doctor requested specific testing for eosinophil count.

Thank you!  I have just looked this up and I am not sure if she has ever been tested for this.

 

It is something I will check next week with GI.

[mommida]

Unfortunately there has been a huge increase in diagnoses.  There is also *some connection to seasonal airborne allergens.  Start keeping a daily journal.  Note food, activities with locations (ie horseback riding at barn ~ so is the reaction to the horses, wheat based food for horses, barn cat dander,field of weeds that horse rode through, or mold/ fungus growing on the stall wall.), air quality, BM's, and symptoms with special note of sleep patterns. 

[Niks]

Just a quick update.  J has had a really tough month.  She is really struggling walking any distance and on one occasion we had to even hire a wheelchair as her pain levels were just so bad she couldn't straighten up and walking was impossible.

 

Her GP has given her morphine patches, which has taken the edge off, but still really struggling.  Last Tuesday we had a 2 hour appointment with GI.  He does not think her symptoms are coeliac related and has not seen evidence that she even is coeliac!  He is doing a full colonoscopy and endoscopy this Tuesday, so hopefully something will show.

[mommida]

Thoughts and prayers for the testing this Tuesday.  I really pray you get some answers and healing!

 

Take care!  (You might want to bring some pain reliever for yourself.  I always end up getting a stress migraine during most of my childrens medical stuff.)

[Niks]

Thanks Mommida!  Good advice xx

[GFinDC]

Hi Niks,

 

I pray in Jesus name that she may get relief soon from her pain.  If they do a traditional endoscopy or colonoscopy they can see for 5 or so feet into the gut.  The small intestine is around 20 to 22 feet long, so that leaves a lot of unexplored territory.  If they don't get anywhere with traditional methods, it might be worthwhile to find a hospital that can do the capsule endoscopy that take pictures along he length of the gut.  That way they can see more of the gut and are more likely to spot problem areas.  AFAIK they can't get biopsy samples with a capsule endoscopy, so the traditional process is still needed for that.