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This Is Down To Being Glutened Isn't Is?

Birdsong

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Birdsong Newbie
Birdsong
Posted

Daughter is 14. After a 'Eureka' moment, I realised (with no help from the medical profession who were very nice but pretty useless during all the times we looked to them for help with miscellaneous symptoms) that my girl had gluten issues.

 

After taking gluten out of her diet, she improved hugely. No more sore stomachs, heartburn, feeling sick, tingling hands and feet, joint pain, dark circles under eyes, anxiety, yadda yada yadda. She had many many of the listed symptoms, not just one or two.

 

After being small all her life and not growing at all in the last two years, she's grown almost an inch in the last month. (We took her off gluten at the start of February.)

 

I don't need a Doctor or a test to tell me she has gluten problems.It's pretty evident imo.

 

Anyway, she was at a school thing at the weekend and ate a packet soup there on Saturday afternoon. She hasn't been feeling well since Sunday and it's got so bad that she had to get sent home from school today (Tuesday). She has a migraine, sore joints, really bad pains in her stomach even if she eats good food we know is ok. She feel sick and has a pain in her chest when she breathes. All these things she has experienced before so I'm sure it's because she's had a severe reaction to ingesting gluten via the packet soup on Saturday. I know this is wheat and gluten heavy after looking it up online.

 

In my heart I feel all her symptoms are as a result of being glutened but as all this is new to us I think I'm looking for other opinions or reassurance that being glutened after removing gluten from your diet can be really quite severe and her symptoms do fit with this?  Also, does the timeline seem reasonable to tie her symptoms down to being glutened?

 

 

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bartfull Rising Star
bartfull
Posted

Yes, after remiving gluten the reaction can be swift and severe. But I'm wondering if perhaps you should get her tested. Yes, she would have to go back on gluten for the tests to be valid, but if you take this list to the doctor and insist he perform these test, or better yet, find a new doctor for her, I think it would help in a lot of ways. 

 

tTG IgA and tTG IgG

DGP IgA and DGP IgG

EMA IgA

total serum IgA control test

 

For one, you could set up a plan at the school to take care of her dietary needs. Also, when she goes to college she will need an official diagnosis in order for them to provide food she can eat. And besides that, celiac runs in families. If it turns out she does have it, the rest of the family should be tested, as well as any children she may someday have.

 

But in the meantime, go to the coping section here and read (and have her read) the Newbie 101 thread. It will help you both tremendously.

notme Experienced
notme
Posted

since i have been gluten free, it takes 48 hours before i am feeling all the symptoms of getting glutened.  then it takes 2 weeks to get to feeling back to normal good.  it feels like a train hit you  :(

 

barty is right - if you can get her tested, it would be a good idea.  if she has it, you and her dad should get tested because she got it from one of y'all.  hope she feels better & good luck :)

CaliSparrow Collaborator
CaliSparrow
Posted

It takes a few days to hit me as well although sometimes I get a few suspicious symptoms right away. I also have multiple symptoms (pretty much the ones you listed) and agree with Notme that it feels like being hit by a train. The symptoms do seem more severe since I went gluten-free even though I was extremely sick beforehand.

It's shocking to find out how many things have gluten in it and how often we pop things in our mouth. That was a big eye opener for me and about the time I felt well was about the time I was glutened again the first year. It does take about 10 days to two weeks for my symptoms to recede and I end up catching whatever is going around and then a UTI so due to that it drags out for a while. My doctor told me that'll get better the more I've healed.

I'm glad your daughter gained some height. I stretched everyday for a year to gain an inch at her age. I'm thrilled for her on that front.

Here are a few things that helped me from the start:

How to cope with a celiac flare:

Open Original Shared Link

Jane. Anderson writer for about.com - excellent articles

Open Original Shared Link

Good luck to her!

Cali

NoGlutenCooties Contributor
NoGlutenCooties
Posted

and I end up catching whatever is going around and then a UTI so due to that it drags out for a while.

 

OMG!  I had no idea that UTIs could be associated with gluten issues.  I get UTIs fairly regularly, although they've only been bad enough and lasted long enough for me to break down and take an antibiotic for it twice in my lifetime (I HATE antibiotics!!!).  If going gluten-free means that I may not have to deal with them anymore, you just made my day!  :D

CaliSparrow Collaborator
CaliSparrow
Posted

OMG!  I had no idea that UTIs could be associated with gluten issues.  I get UTIs fairly regularly, although they've only been bad enough and lasted long enough for me to break down and take an antibiotic for it twice in my lifetime (I HATE antibiotics!!!).  If going gluten-free means that I may not have to deal with them anymore, you just made my day!  :D

I've had them since childhood. It was a sad day I had to surrender Mr. Bubble. I discovered D-Mannose which worked faster than any antibiotic regimen I'd been on. My current doctor recommends to her patients with recurrent UTIs to take them everyday and when I'm consistent about that, I don't get the UTI. I expect this will resolve the more I heal!

Open Original Shared Link

Gemini Experienced
Gemini
Posted

An even better, more natural supplement to use for UTI's are cranberry juice or cranberry capsules, which is cranberries in pill form.  They can be bought at any health food store.

It is just the concentrated form of cranberries, which is a well known inhibitor of UTI's.  I don't like cranberry juice...its way too sweet/sour for me.  But I used these supplements on the one time I had a UTI and I did not have to go on an antibiotic......the supplements got rid of the infection and it never came back.  I did catch it early on, though, so not sure if they would work alone for a raging infection.

 

I think it has something to do with PH levels in your urinary tract.  Drinking a small amount of cranberry juice daily or using these can help prevent them from occuring in the first place.

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NoGlutenCooties Contributor
NoGlutenCooties
Posted

Yep - typically when I've gotten them I do the cranberry juice and Vitamin C thing.  I'll have to check out the D-Mannose - never heard of it.  But with any luck I actually won't get them anymore!  :D   And I agree that it most likely has a lot to do with PH balance... which has got to be much improved since going gluten free!

 

<insert Snoopy happy-dance here>

CaliSparrow Collaborator
CaliSparrow
Posted

I'll have to check out the D-Mannose - never heard of it.

<insert Snoopy happy-dance here>

D-Mannose is made from the cranberry. Amazon carries them. I'd imagine they all work pretty well. I have taken D-Mannose when it's raging and was surprised at how fast the infection subsided. Most of mine raged because I'd have no symptoms UNTIL it raged (plus also, foggy head). I get off track if I run out of supplements at the same time I'm dealing with an intolerance episode but if I take them regularly, no UTI.

Sorry to go off topic but also glad because I DO need to buy more! UTIs are a hassle none of us needs.

moosemalibu Collaborator
moosemalibu
Posted

Also wanted to chime in that getting a UTI is par for the course when I get glutened. It's crazy.

Gemini Experienced
Gemini
Posted

No, it's not crazy, it's inflammation!  Everyone's body has its own favorite place for inflammation to strike.  With me, my eyes because I have Sjogren's Syndrome so it doesn't take much before the eyes get messed up.  Spring allergy season is not my favorite time of year!   :angry:  Even on the rare occasion when I take a gluten hit, my eyes become inflammed.

Birdsong Newbie
Birdsong
Posted
  • Author

Hi guys, thank you for replying. It's good to read other people's thoughts and experiences.

 

Daughter is feeling better but she still has stomach pains, heartburn (although not as bad) and occasional chest pain and sore to breathe thing (she gets the chest pain at the same time as the heartburn so it's obviously linked). It's *only* been 6 days since she was glutened though so I guess it's to be expected. 

 

We're in Scotland and docs in our neck of the woods generally aren't too clued up about gluten imo. I've been complaining on and off for years about not feeling well and I've had various tests done and even an MRI scan and they've come up with nothing other than to diagnose vertigo. The whole family stopped eating gluten when we suspected daughter had problems and all the things I was moaning about seemed to have gone so I suspect I have gluten issues too. I haven't been dizzy or felt the same 'woozy head' I always had previously, for one example.

 

I bought a coeliac test for her online that was recommended by this doc who is coeliac himself.....Open Original Shared Link. He's a doctor and he had no idea he was coeliac, nor did the doc who was treating him, he diagnosed IBS which is what most of our docs here tend to do (again imo).

 

Anyway, the test was negative so I figured there was no point in going to the doc. We felt we needed daughter off gluten asap rather than waiting months for a biopsy which would have been the next step.

 

I know removing gluten was the right thing to do but sometimes it's good to get a bit of reassurance or to get someone else's thoughts on what's going on, especially since it's all quite new to us. Thanks :)

anti-soprano Apprentice
anti-soprano
Posted

Your daughter's reaction is typical.  What Barty said absolutely applies to American schools.  They have special plans they are required by law to adhere to if a child has a medical diagnosis.  I'm not sure how that works in Scotland, but I would suggest having a conversation with school officials to start.  Being glutened is too horrid to make a habit of it.  It is up to both her and you (obviously more you, since she is a minor) to protect her from eating things that cause her physical pain with advocacy for her special needs, regardless of whether it is celiac or gluten intolerant.  

 

Best of luck to you!  I'm so glad you were smart enough to figure out her problem before she endured years and years of damage to her body.  Kudos to you, Mom!!!

 

Shellie

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