Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

This Is Down To Being Glutened Isn't Is?

Birdsong

Recommended Posts

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?

 

 

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,962
    • Most Online (within 30 mins)
      7,748
    AlissaW
    Newest Member
    AlissaW
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Does anyone here also have Afib

      By Scott Adams · Posted

      If black seed oil is working for his Afib, stick to it, but if not, I can say that ablation therapy is no big deal--my mother was out of the procedure in about 1 hour and went home that evening, and had zero negative effects from the treatment. PS - I would recommend that your husband get an Apple watch to monitor his Afib--there is an app and it will take readings 24/7 and give reports on how much of the time he's in it. Actual data like this should be what should guide his treatment.
    • Jacki Espo
      Covid caused reoccurrence of DH without eating gluten

      By Jacki Espo · Posted

      This happened to me as well. What’s weirder is that within a couple hours of taking paxlovid it subsided. I thought maybe I got glutened but after reading your post not so sure. 
    • Mari
      New Celiac Mama in My 30s

      By Mari · Posted

      Hi Tiffany. Thank you for writing your dituation and  circumstancesin such detail and so well writte, too. I particularly noticed what you wrote about brain for and feeling like your brain is swelling and I know from my own experiences that's how it feel and your brain really does swell and you get migraines.    Way back when I was in my 20s I read a book by 2 MD allergist and they described their patient who came in complaining that her brain, inside her cranium, was swelling  and it happened when she smelled a certain chemical she used in her home. She kept coming back and insisting her brain actually swelled in her head. The Drs couldn't explain this problem so they, with her permission, performed an operation where they made a small opening through her cranium, exposed her to the chemical then watched as she brain did swell into the opening. The DRs were amazed but then were able to advise her to avoid chemicals that made her brain swell. I remember that because I occasionally had brain fog then but it was not a serious problem. I also realized that I was becoming more sensitive to chemicals I used in my work in medical laboratories. By my mid forties the brain fog and chemicals forced me to leave my  profession and move to a rural area with little pollution. I did not have migraines. I was told a little later that I had a more porous blood brain barrier than other people. Chemicals in the air would go up into my sinused and leak through the blood brain barrier into my brain. We have 2 arteries  in our neck that carry blood with the nutrients and oxygen into the brain. To remove the fluids and used blood from the brain there are only capillaries and no large veins to carry it away so all those fluids ooze out much more slowly than they came in and since the small capillaries can't take care of extra fluid it results in swelling in the face, especially around the eyes. My blood flow into my brain is different from most other people as I have an arterial ischema, adefectiveartery on one side.   I have to go forward about 20 or more years when I learned that I had glaucoma, an eye problem that causes blindness and more years until I learned I had celiac disease.  The eye Dr described my glaucoma as a very slow loss of vision that I wouldn't  notice until had noticeable loss of sight.  I could have my eye pressure checked regularly or it would be best to have the cataracts removed from both eyes. I kept putting off the surgery then just overnight lost most of the vision in my left eye. I thought at the I had been exposed to some chemical and found out a little later the person who livedbehind me was using some chemicals to build kayaks in a shed behind my house. I did not realize the signifance  of this until I started having appointments with a Dr. in a new building. New buildings give me brain fog, loss of balance and other problems I know about this time I experienced visual disturbances very similar to those experienced by people with migraines. I looked further online and read that people with glaucoma can suffer rapid loss of sight if they have silent migraines (no headache). The remedy for migraines is to identify and avoid the triggers. I already know most of my triggers - aromatic chemicals, some cleaning materials, gasoline and exhaust and mold toxins. I am very careful about using cleaning agents using mostly borax and baking powder. Anything that has any fragrance or smell I avoid. There is one brand of dishwashing detergent that I can use and several brands of  scouring powder. I hope you find some of this helpful and useful. I have not seen any evidence that Celiac Disease is involved with migraines or glaucoma. Please come back if you have questions or if what I wrote doesn't make senseto you. We sometimes haveto learn by experience and finding out why we have some problems. Take care.       The report did not mention migraines. 
    • Mari
      My only proof

      By Mari · Posted

      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but another, tissue transaminasewas normal. Itdid show I was  allergic to cows milk and I think hot peppers. I immediately went gluten free but did not go in for an endoscopy. I found an online lab online that would do the test to show if I had a main celiac gene (enterolab.com). The report came back that I had inherited a main celiac gene, DQ8, from one parent and a D!6 from the other parent. That combination is knows to sym[tons of celiac worse than just inheriting one main celiac gene. With my version of celiac disease I was mostly constipated but after going gluten-free I would have diarrhea the few times I was glutened either by cross contamination or eating some food containing gluten. I have stayed gluten-free for almost 20 years now and knew within a few days that it was right for me although my recovery has been slow.   When I go to see a  medical provide and tell them I have celiacs they don't believe me. The same when I tell them that I carry a main celiac gene, the DQ8. It is only when I tell them that I get diarrhea after eating gluten that they realize that I might have celiac disease. Then they will order th Vitamin B12 and D3 that I need to monitor as my B12 levels can go down very fast if I'm not taking enough of it. Medical providers haven't been much help in my recovery. They are not well trained in this problem. I really hope this helps ypu. Take care.      
    • knitty kitty
      Does anyone here also have Afib

      By knitty kitty · Posted

      Fascinating.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.