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

How vigilent do we need to be?

MelissaNZ

By MelissaNZ
in Coping with Celiac Disease

Recommended Posts

MelissaNZ Apprentice
MelissaNZ
Posted

My daughter has just been diagnosed and her symptoms are relatively minor, in that she doesn’t get major stomach pains etc (just sometimes feels a bit yucky and the odd throw up once very few months), but her main symptoms are she can get constipated and also has low weight and height gain.

 

So how vigilent do we have to be?  Like I know we have to remove gluten from her diet, but do we have to be super careful about cross contamination? Worry about things like gluten in hair products, cooking with different pans etc?  Will tiny amounts cause her on-going damage? It’s difficult because it’s not like she is suddenly ill or has symptoms  when she has some, so we don’t know what’s really going to affect her or how careful we have to be about cross contamination, as her symptoms are something we can't physically see (besides her being tiny).  Is everyone different and some can tolerate tiny amounts? – or does everyone who has Celiacs have to be extremely careful about every little speck of gluten they come across?

 

What about things like a bag of chips that says they just contain potatoes and oil – are they okay?  Or does it specifically have to say gluten-free?

 

Thanks

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

Celiac.com Sponsor (A8-M):


RMJ Mentor
RMJ
Posted

How was she diagnosed?  If she had antibody tests, you can repeat those in 6-12 months to see if they return to normal levels.  If not, you should be more careful.

I had few if any symptoms, but discovered through antibody testing that I am very sensitive to teeny tiny levels of gluten.  One of my antibody levels (Dgp IgA) is still a bit above the normal range.  I find out next week if my villi are damaged (doc decided to do an endoscopy since I was due for my every ten year colonoscopy).  Visual examination said some villi are blunted, just waiting for biopsy results.

MelissaNZ Apprentice
MelissaNZ
Posted
  • Author

She had blood tests and are waiting on a biopsy.  These were her test results - so I'm guessing they are anti-body tests?:

 

Gliadin peptide - 17.2

tTG IgA AB - 15.4

 IGA - 0.7

Endomysial antidoies - positive.

RMJ Mentor
RMJ
Posted

Yes, those are antibody tests.  The gliadin, tTg and endomysial should be repeated after she has been gluten free for a while (but DON'T go gluten free until the endoscopy/biopsy has been done).   The IgA is a control test.  Different laboratories use different ranges so to compare, the repeat tests should be done by the same lab as the original ones.  And you'll need to find out the reference ranges so you'll know when she is in the normal range.

pschwab Enthusiast
pschwab
Posted

My two year old was just diagnosed a little over three months ago. We have chosen to be extremely careful and overly cautious until we can go in for his follow up and see how much better he has gotten. There are so many different symptoms and some people don't outwardly show much. But that doesn't mean their body isn't being harmed immensely on the inside. In my opinion kids should be the most cautious because their bodies are growing and developing. But we are very new to this, and I am very far from being an expert. I would check with your gi dr. Good luck. I'm sure you will do great since you sound like a concerned parent. :)

squirmingitch Veteran
squirmingitch
Posted

You need to be worried about cross contamination. Read our Newbie 101 pinned to the top of the Coping Section. It will tell you what you need to change.

Ockero girl Newbie
Ockero girl
Posted

Hi

my daughter was diagnosed 1.5 years ago at 3.5 years old. She also hadn't grown properly (still looked 18 months old) and hadn't put on any weight for a year. She also had ADHD like symptoms and occasional diarrhea (although I think this was lactose!). 

I was ultra cautious initially, but rewarded when my daughter put on 3kg and grew 5cm in a month. Now she has grown 16cm in 12 months and is in the normal range for both height and weight growth charts. Our whole house is now gluten free and I replaced all chopping boards, non stick pans and anything with cut marks in them such as plastic bowls.

You don't have to buy only products with the specific gluten free labels on. I also buy products that don't label any gluten containing ingredients and don't have the warning statement of may contain gluten (but I live in Europe so the labeling might be different). Also gluten free food is full of sugar and tastes awful IMHO! I make a lot of our snacks and cakes and they don't taste much different to gluten stuff.

I also make sure her toothpaste is gluten free as she sometimes swallows some! I was told sodium laurel sulphate is wheat - can someone confirm this? I don't worry about anything else.

I think my daughter has occasionally had some cross contamination when out, but hasn't reacted to it other than a mild stomach ache. this is something you will find out later specific to your own daughter as some people can be very ill for a long time.

Good luck - you will work it all out. 

 

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

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted
4 hours ago, Ockero girl said:

Hi

my daughter was diagnosed 1.5 years ago at 3.5 years old. She also hadn't grown properly (still looked 18 months old) and hadn't put on any weight for a year. She also had ADHD like symptoms and occasional diarrhea (although I think this was lactose!). 

I was ultra cautious initially, but rewarded when my daughter put on 3kg and grew 5cm in a month. Now she has grown 16cm in 12 months and is in the normal range for both height and weight growth charts. Our whole house is now gluten free and I replaced all chopping boards, non stick pans and anything with cut marks in them such as plastic bowls.

You don't have to buy only products with the specific gluten free labels on. I also buy products that don't label any gluten containing ingredients and don't have the warning statement of may contain gluten (but I live in Europe so the labeling might be different). Also gluten free food is full of sugar and tastes awful IMHO! I make a lot of our snacks and cakes and they don't taste much different to gluten stuff.

I also make sure her toothpaste is gluten free as she sometimes swallows some! I was told sodium laurel sulphate is wheat - can someone confirm this? I don't worry about anything else.

I think my daughter has occasionally had some cross contamination when out, but hasn't reacted to it other than a mild stomach ache. this is something you will find out later specific to your own daughter as some people can be very ill for a long time.

Good luck - you will work it all out. 

 

I don't think sodium laurel sulphite is ever even made from wheat.  But even if it were, it seems to be one of those chemicals that has none of the proteins left.

But, whether you believe me or not.... I have never seen it listed on any reputable celiac group sites as something to avoid for gluten.

 

Beverage Proficient
Beverage
Posted

Yes you need to read Newbie 101. Yes you need to be super vigilent. Yes even a spec the size of your smallest freckle can cause a problem for her. Even if it does not trigger noticeable symptoms, it does not mean it's not triggering an attack on her intestines!!! 

Yes, donate all non-stick and cast iron cookware and muffin pans and glazed on baking pans to someone else, get rid of wooden spoons, get a new toaster, waffle maker, etc.  Get rid of old cutting boards, wood and plastic.  Get new sponges! Anything previously used to cook something with gluten can hold onto it. Seriously clean all regular pans and utensils you are going to keep, scrub scrub srub. Clean out the fridge, cabinets, and drawers for any crumbs or flour left behind.

I chose to replace all face and hair and body products with gluten free. Started with the obvious of lipstick (I now use Red Apple brand), face, and hair (washes over your face when you rinse), then replaced body lotions after I used the old ones up (too easy to scratch your leg or arm and oops....)

I sincerely and strongly recommend that the whole household be gluten free within the house. No way was I going to cook one pot of something for him and one for me...too easy to use one spoon to stir the wrong thing...added clean up and what was the point anyway...gluten free is better for everyone anyway (read the book The Grain Brain). 

Until my partner was also diagnosed with Celiac's, we tried all meals at home being gluten free except for bread or cracker items for him. But that was kinda stressful on me.  Can I safely use the sponge to wipe up that crumb and then what do I do with the now  contaminated sponge?  I read to have 2 sponges...but what about the crumb that I didn't see that I wiped up with my so-called gluten free sponge?  What if a spec gets on the table mats...so I can't even put my fork on a table mat in case it has a crumb? Too crazy and you just never relax. What if he dipped into the jam and then put it on his toast and then re-dipped??? (caught him doing that even though he was trying to be very very careful...things like that are just too much of a habit). What if he ate that bread and then kissed me??? Ahhhhhhhh! Too much!

As soon as he was diagnosed and we tossed the remaining gluten items, it was a huge sense of relief. So yes, you can manage keeping your daughter's food gluten free through lots of care, but really, it is the mental side of it that was important to me.  So set yourself up for SUCCESS, not failure and paranoia. HOME SHOULD BE A SAFE ZONE!!!

Also...we have pets, so if they are prone to licking you, you might want to consider that. There are lots of grain free pet foods available now...grain isn't so great for a lot of them either.

My latest phase has been to replace all my herbs & spices (they were old anyway). I read that although they are naturally gluten free, outside testing has shown that they can contain some high amounts, possibly from cross contamination in processing or in where they are grown.  Spicely is a good brand that is gluten-free, but I couldn't find it around where I live. I found Morton & Bassett now labels theirs gluten-free, and I can find it at Fred Meyer's (grocery chain in the northwest), or mail order it from their web site. They have specials regularly, just sign up for their newsletter.

I'm sure there will be those who totally disagree with me, but I have been so much happier, much more mentally positive, and this is so much easier to deal with since my home is now totally gluten-free.  A big weight was lifted just by having my safe world at home.  Good luck!

 

 

notme Experienced
notme
Posted

just a note:  gluten cannot enter your skin even if you cut yourself, so if you're not eating/drinking/getting it into your mouth, you're good.   it's a skin vs molecule thing.    

Beverage Proficient
Beverage
Posted

Right, but if it's on your skin or your hair and you touch that and then touch something that goes into your mouth or put your hands in your mouth, then you can get glutened. That's why I used up my body lotion, but was really careful about washing hands if I touched my skin ... it was a pain to do and it's much nicer now that all my body products are free of that stinkin' gluten.  And my doctor said to be careful of all products that get into eyes, nose, ears, and of course mouth ... all those parts drain down the throat to the stomach.

 

notme Experienced
notme
Posted

o, i see what you mean.  one of the hardest things i had to learn was to stop licking my fingers lolz 

Archived

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

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


  • Member Statistics

    • Total Members
      131,946
    • Most Online (within 30 mins)
      7,748
    Miva
    Newest Member
    Miva
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

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



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • 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.
    • DebJ14
      Does anyone here also have Afib

      By DebJ14 · Posted

×
×
  • 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.