terrible symptoms, need feedback

[Ecgmmom]

My 7 year old was dx with celiac disease in December, via blood and endo after we took her to Stanford for chronic low ferritin (only "symptom" since 18 mos old). Fast forward four months, she is gluten free and tells me she "finally doesn't have a tummy ache every day". I am heartbroken that I didn't realize any of this sooner.

Ever since we have been gluten free, her reaction to glutening has become worse and worse. It has happened three times now- she is extremely sensitive to cross contamination. The most recent incident was at Outback for my son's birthday dinner. They have a gluten-free menu and separate food prep area.....supposedly. It didn't work out and she was sick within 15 minutes of eating (this is about how fast she reacts).

Here is what I am looking for feedback on-- her reaction involves severe stomach pain AND her legs seize up so she can't walk. This can last anywhere from a few hours to a few days (the stomach always seems to last at least two days). She literally crawls around on the floor and won't bear weight on her legs. She says her quads hurt and she cannot straighten them. I carried her out of the restaurant, both of us in tears.

Our doctor (GI) looks at me oddly when I describe this leg reaction. She initially thought maybe we were vitamin deficient, however her only deficiency is Vitamin D. Has anyone else experienced a reaction like this? Do you have any suggestions for things that can help the tummy pain? I am a wreck over all of this, almost becoming afraid to go anywhere. But, I DO NOT want to instill fear in her, she has to live her life and we need to teach her to do so without fear. I'd love to hear from other parents about all of this, it's so overwhelming.

Jenny

[Ennis-TX]

7 hours ago, Ecgmmom said:

My 7 year old was dx with celiac disease in December, via blood and endo after we took her to Stanford for chronic low ferritin (only "symptom" since 18 mos old). Fast forward four months, she is gluten free and tells me she "finally doesn't have a tummy ache every day". I am heartbroken that I didn't realize any of this sooner.

Ever since we have been gluten free, her reaction to glutening has become worse and worse. It has happened three times now- she is extremely sensitive to cross contamination. The most recent incident was at Outback for my son's birthday dinner. They have a gluten-free menu and separate food prep area.....supposedly. It didn't work out and she was sick within 15 minutes of eating (this is about how fast she reacts).

Here is what I am looking for feedback on-- her reaction involves severe stomach pain AND her legs seize up so she can't walk. This can last anywhere from a few hours to a few days (the stomach always seems to last at least two days). She literally crawls around on the floor and won't bear weight on her legs. She says her quads hurt and she cannot straighten them. I carried her out of the restaurant, both of us in tears.

Our doctor (GI) looks at me oddly when I describe this leg reaction. She initially thought maybe we were vitamin deficient, however her only deficiency is Vitamin D. Has anyone else experienced a reaction like this? Do you have any suggestions for things that can help the tummy pain? I am a wreck over all of this, almost becoming afraid to go anywhere. But, I DO NOT want to instill fear in her, she has to live her life and we need to teach her to do so without fear. I'd love to hear from other parents about all of this, it's so overwhelming.

Jenny

Unfortunately she has a severe reactions like me to straight up exposures....or like I used to. I used to lose full body motor control and collapse, this was from a form of gluten ataxia. I had to give up eating out aside from a few places. I cook and eat at home and my house is 100% gluten free. I take my own food with me or meal bars when I head out. The nerve/brain  damage and scares are not worth it.
GlidenX I have taken with exposures since then...I have not had the motor loss, lessened pain....but I have still had numbness and D for weeks after showing it is still damaging my nervous system and gut but to less of a degree...but I have not chanced it or tested it with straight up gluten exposure just accidentally contaminated products like seeds, nuts etc.

Gluten exposure symptoms do get worse once gluten free, but the symptoms always evolve over time. Have you read the newbie 101 section? We do suggest a whole foods only diet at first with no dairy or oats to help healing and make it easier. I do have a list of foods you can go over to help.
https://www.celiac.com/forums/topic/91878-newbie-info-101/
https://www.celiac.com/forums/topic/121148-gluten-free-food-alternative-list-2018-q2/

I keep medical red tags on me if I happen to lose control in public with emergency contact info. And never leave the house without my own prepacked meals. Sort of becomes life and second nature after years....you just do not think of eating outside the house much...and other foods sorta look alien, and distasteful as you think of how they would effect you...actually I am disgusted when I see others eating gluten food...might be my autism but I feel like I am watching aliens eating poison and just do my own thing. So yes there is fear there, but I am used to it, and it keeps me from chancing my health.

I will admit it took years of feeling "left out" and "ostracized " for my issues but later came to cope with it is just food and I need to bring my own when eating with others, I found making normally gluten free meals and tasty gluten free alternatives to gatherings enabled me to eat with others without fear and share my love for food......sort of funny it is now more of a thing for me to invite family over to my house for holidays for meals, and work with them on menus.
There are plenty of ways to help her out in the future with having fun and growing up in a pretty much normal way. There are plenty of mothers here who can tell you fun activities for kids and ways to enjoy partys, get together etc. There are even school programs to accommodate those with issues like these so there will be less worry of her at school.

Feel free to ask around here for on subjects.

 

[DWmomoffour]

Hi, 

I completely get it. My almost 7 year old daughter is currently going through the diagnosis phase, all of the blood work came up positive for celiac and we have to see a GI dr next. She is the same way, in the bathroom 15 minutes after eating (pancakes, cake, etc) with a horrible tummy ache. The leg pain! Oh the leg pain! For almost 3 years excruciating leg pain that no one could figure out the cause. Now that the tummy issues have worsened, the doctor connected the leg pain to the tummy and here we are. I am sorry your baby is going through this too  Message me if you want to talk, your comments reflect how I feel too. I can’t wait to go gluten free, it’s so hard seeing her tummy hurt every day when we know how to make it stop. But we have to wait so we don’t influence the test results dr says...

[lisas11lisa]

Wow....I have never heard of this reaction....so glad someone commented that can help you....My question to you is...How low was his Ferritin level??..Did He require Iron Infusions???...This is how I was diagnosed also...Mine was a 5....and D was low...I could hardly get out of bed...and thought I was dying....after 3 infusions...I FELT so much better and...I am maintaining decent numbers with a Strict gluten-free diet and vitamin D supplement....Praying you figure it out....I tell EVERYONE...RESEARCH IS YOU FRIEND...GOODLUCK!

[cyclinglady]

I am so sorry that your daughter is going through this!  My child does not have celiac disease, but I do.  My advice is to NOT eat out for the next six months, until her symptoms have improved, or her antibodies have normalized.  Try to focus on non-processed foods.  Have some gluten-free goodies on hand (frozen cupcakes and I know this is contradictory, but she is a kid who has plenty of opportunities to celebrate) and bring food with you always.  

Four months into the gluten-free diet is a short amount of time for healing, even in kids.  Why?  Everyone is different in terms of the damage Celiac Disease has caused.  Nerve damage is often the slowest to heal.  The diet alone, has a steep learning curve.   Expects setbacks (yeah....you have already experienced this ?).  Take risks when she is well.  

Get the rest of the family tested.  Then make sure you have safe food handling practices in place or go 100% gluten free at least until she is better.  The rest of your family can get their gluten fix outside of the home (school or work).  Stick to naturally gluten free foods and you will not impact your food budget at all.  Again, just a temporary fix.  

I hope she feels better soon.  

[desirun]

My daughter is 13. She was diagnosed last August. She also had horrible neurological symptoms. We went to a highly recommended and regarded GI doc who was stumped by her neuro symptoms and didn’t believe they were celiac related. We finally took her to the best Celiac GI specialist in our area who understood that her systems were related to gluten and celiac disease. Don’t feel crazy, maybe it’s time to switch doctors.

As for the cross contaminations, I would start packing all your own food. It sucks, there’s no other way to put it and life changes, but it does get easier and better. 

Hang in there and give yourself grace!

[Posterboy]

17 hours ago, Ecgmmom said:

Our doctor (GI) looks at me oddly when I describe this leg reaction. She initially thought maybe we were vitamin deficient,

Ecgmmom,

***** this is not medical advice just my experience with taking Magnesium to help my charlie horses.

sometimes I get busy writing and forget to say that.

I don't know why your daughter reacation's would be after a meal specifically.

unless her stomach acid is  non-existent as to just low. . . the difference between hypochyloridia and achylorida.

sometimes taking iron can be harsh on the stomach because it is hard to absorb.  Proteins (can be hard) hard to digest without some stomach acid to trigger our food enzymes like Pepsin to digest meat.

the low ferritin is a good indicator of low stomach acid.

see this thread on IDA and the role low stomach acid plays in it's aborbtion.

since the test for stomach acid levels is considered invasive (requiring entubation .i,e a tube down the nose (I think)) most people have never had this procedure done.

You can test the low magnesium theory by using epsom salts in her bath water.

**** do not leave her unsupervised because too much epsom salts can cause drowsiness and sleepiness and you don't want her to fall asleep in the bathtub.

but the magnesium will be absorbed through the skin releasing the muscles.

that is why it works for charlie horses and IV injections for professional athletes helping cramps.

here is a very exhaustive article on sub-clinical magnesium levels and why it is usually  not diagnosed by the british medical journal  (BMJ) entitled Subclinical magnesium deficiency: a principal driver of cardiovascular disease and a public health crisis

Open Original Shared Link

quoting a quick excerpt about magnesium deficiency.

" (Low) Hypomagnesemia is a relatively common occurrence in clinical medicine. That it often goes unrecognized is due to the fact that magnesium levels are rarely evaluated since few clinicians are aware of the many clinical states in which deficiency, or excess, of this ion may occur".

Usually this takes a full 6 months of supplementation 3/day to get rid of this condition completely. . . . but improvement can be seen in as little as 2 to 12 weeks time depending on the level of deficiency.

I see this alot and try educate people to the many efffects of low magnesium in the body.

we waste away when we don't have enough magnesium in the body.

take this seemingly complex medical problem often associated with loud noises as discussed on tinnitus talk.  and though I tell my friends with tinnitus of the power of magnesium they seldom listen  . . not believing a vitamin/mineral can make a difference.

Open Original Shared Link

quoting

"Let’s talk about tinnitus magnesium treatment, how it works to stop ringing in your ears, and how you can start using it.

• Not only can being around loud noise cause tinnitus, it can also cause a magnesium deficiency, a 2001 study published in the “Occupational Medicine” journal stated.
• Another study published in the American Journal of Otolaryngology found that test subjects who drank a magnesium supplement (167mg) had fewer loud-noise-hearing threshold shifts (like tinnitus) that can cause hearing loss.
• Recent studies also suggest that taking a magnesium supplement can reduce hearing loss associated with noise trauma and reduce the likelihood of getting tinnitus, if the supplement is provided within a short window of time to the event."

And in 2011 this was proven to be true.

quoting again

And the most promising:

• A Open Original Shared Link showed that magnesium intake reduces the intensity of tinnitus. A study group was given approx. 532 mg per day of magnesium for three months. After the trial period, the tinnitus sufferers reported that their symptoms were significantly reduced.

even enough so they did not complete study because they begun showing improvement in less than a month.

but with any supplement/vitamin/mineral you have too learn how to take it.

Magnesium Citrate and Magnesium Glycinate are the easiest absorbed forms.

Best taken with meals. . . . if the cramps get better it was a magnesium deficiency.

But you need some stomach acid to absorb them remember the difference between hypo and achyloridia.

and why the espom salt bath can test this theory because the magnesium can be absorbed through the skin.

It is not uncommon for stomach acid to be low in celiac's and I believe commonly misdiagnosed (remember the test is invasive) and thereof often never done.

Here is my experience with low stomach acid.

this is not as far fetched as it sounds.

if you think of it logically.  If you can't digest the food your are eating then you would expect to gave GI problems with undigestion, .i.e. indigestion.

the Iron deficiency tell's us our stomach acid is not strong enough to digest/absorb our iron from food naturally.

see this link on the role of gastric juices in food iron absorption.

Open Original Shared Link

now all this is good theory but has this ever been tested --- I mean low or no stomach acid in celiac's.

as it turns out there has been a study about this association.

up until now this has been only my experience and research hunch unless there is a study that can confirm this and I am always doing research it seems.

because I like helping people and if it helped me it is bound to help other's too.

And why I am always writing/educating on the benefits of Magnesium. . . .because if WE need Magnesium to function properly and we do then why would I or your child be low in it in the first place.

because our stomach acid  has gotten so low it can no longer absorb it.

see this FDA warning on PPIs and the link/association with low stomach acid.

Open Original Shared Link

so now we know low stomach acid can cause low magnesium levels and we theorize the low magnesium is leading to muscle cramps where does that leave us? Right?

I mentioned is there good research about this topic .ie hypochlylorida/achylorida in celiac's.

And why I didn't know this when I took betaineHCL for myself it turns out .  . my hunch was correct.

I see good forgotten research every day that has not been passed down to the next generations of doctors/patients.

It turns out the diagnostic delay in a clinical setting is 17 years before doctor's often except things in medical practice sadly it seems there is amnesia too of older good research. . . especially when it get 15 or 20 years old.

I think it's because vitamins/minerals don't "pay" the bills and too often we look for the next medical "miracle pill" today to help us when 30 years ago Vitamin/Minerals where all that was needed to help keep us healthy.

and as I like to think about it we don't get low in a medicine that makes us sick but a vitamin. . hence it's name.

see this blog post about that topic when you have the time.

but I said there was good medical studies/research on the topic of low/no stomach in celiac's and here is the research I run up on recently that links these two conditions. . . and explains a lot to me and hopefully others still reading this post. Because I tend to go a little long sometimes in my efforts to help. entitled

"Gastric morphology and function in dermatitis herpetiformis and in coeliac disease."

Open Original Shared Link

and I will quote from some of it for those who don't have the time to read the abstract for themselves.

it should be noted this study is/about confirmed celiac's and low/no stomach acid.

quoting

"Gastric acid secretory capacity was evaluated in 116 patients with dermatitis herpetiformis (celiac in the skin) by means of the pentagastrin test and . . ..

Forty-eight patients (41%) had a maximal acid output less than 10 mmol/h, and 30 of them (26%) were achlorhydric."

Which works out to better than 2/3 (67%) of celiac's had low or no stomach acid who presented/diagnosed as DH.

and it should be noted the lower the stomach acid the greater the chance your celiac would present in the skin (as a DH) diagnosis.

"The frequency of achlorhydria was significantly higher in patients with dermatitis herpetiformis than in 69 patients with coeliac disease."

This may not prove causation but it does establish (in my mind) association and a strong association between low/no stomach acid and a celiac diagnosis.

And why I believe treating my low stomach acid (misdiagnosed/undiagnosed) low stomach acid lead to my celiac diagnosis. . . because my stomach acid was not checked to see if it was low or no.

I know this is a lot to take in - in one setting but I felt I needed to share because I was that kid 30+ years ago.

and if I can help one other kid not have to go through what I went through then I want to do it.
as usual I have rambled too long. . . and probably forget something.

but this can be tested in your kid (officially to get your diagnosis) of hypochloryida/achlorydia by having gastric acid function test aka Heidelberg test done or self treat with 3 or 4 betaineHCL capsules with at least 16oz for every couple capsules to see if it helps her stomach cramping.

they sell it in too forms.  BetaineHCL and betaineHCL w/pepsin and probably the way you want to get it . .because the pepsin helps with protein digestion.

be sure for you or  her to take plenty of water with these capsules so it can activate the stomach acid. and don't start too low.

Only taking one or two might cause burning and it is preferable you do a test with yourself so you can see what works best for you so you can tell her what worked for you. but taking it with plenty of water is key!

here is case study done on hypochylordia and supplementing with betaineHCL.

Open Original Shared Link

see also this timeline figure1 to see how quickly taking powdered stomach acid (beatineHCL) can help gastritis associated with low stomach acid.

Open Original Shared Link

often in 6months people's GI symptom's get better.

again I hope this is helpful.

sorry it was soooooo long but I had a lot of ground to cover!

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,

 

 

[Ecgmmom]

10 hours ago, lisas11lisa said:

Wow....I have never heard of this reaction....so glad someone commented that can help you....My question to you is...How low was his Ferritin level??..Did He require Iron Infusions???...This is how I was diagnosed also...Mine was a 5....and D was low...I could hardly get out of bed...and thought I was dying....after 3 infusions...I FELT so much better and...I am maintaining decent numbers with a Strict gluten-free diet and vitamin D supplement....Praying you figure it out....I tell EVERYONE...RESEARCH IS YOU FRIEND...GOODLUCK!

Her ferritin got as low as 4, that’s when we were referred to Stanford. To date, the highest it has gotten so far is 12 but we are moving in the right direction. No infusions were ever offered as she was only anemic once several years ago....her body managed to keep the hemoglobin up by depleting the ferritin!

[Sienna2013]

@Ecgmmom - At least you figured it out when she was 7 - took us until 12  

Not a doctor, but based on the muscle tension mine experiences I would say test out magnesium supplementing. Magnesium glycinate, a couple of capsules with meals - according to our doc (who has her at 4 capsules daily, which is a little over full RDA), she may not be absorbing it all, and if/when it does become too much, she'll get diarrhea so you'll know it. One of my celiac kids is tense all the time, worsening upon gluten exposure; the other celiac kid has bad back pain when they get glutened. 

Do you mind sharing which doc you have at Stanford? We are bay area as well and I'm looking for a second opinion to help with ongoing neuro symptoms in one kid. UCSF has been no help and I thought Stanford might be, but if they don't recognize muscle cramping as a possible indication of magnesium deficiency in someone whose ability to absorb nutrients is almost certainly compromised (i.e., any recently diagnosed celiac), then I doubt they'll have much useful help to provide on the neuro front.

( @desirun would you mind sharing the name of your celiac specialist who understood about neuro / mood effects? Were they able to do anything to help?)

Until then, I wouldn't bother to eat out unless you can watch the food prepared or the place is 100% gluten-free. Five Guys is pretty good, in our experience, and there are a couple of 100% gluten-free places in SF if you don't mind traveling. Otherwise, bring a meal from home if there is a family dining-out event; your doctor should be willing to give you a doctor's note to bring along in case the restaurant gives you any heat. (We printed a reduced-size one and laminated it.)

Good luck! Make sure to sign her up for Camp Celiac if you didn't already do so, too! Open Original Shared Link