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

Just When I Thought I Was Getting My Act Together...

africanqueen99

Recommended Posts

africanqueen99 Contributor
africanqueen99
Posted

my other two kids got DX with celiac!

 

Sheesh.

 

The youngest (1.5) was DX on blood work alone since her number was so insanely high (two separate draws with crazy high numbers).  Obviously this puts her siblings on high alert.  Their blood came back elevated, but since it's elevated with a DX sibling it's more of an alarm.  Come to find out that the oldest kid (7) hasn't gained ANY weight in the last year.  She's looking thin.

 

The doctor said that they're clearly both "latent celiacs" and if they don't have it today they *will* get it in the future.  She even said she would be happy to write up her celiac letter for their schools today based on this knowledge alone.

 

As a mom I want all the information since we're clearly never going back to gluten.  So I'm putting them both back on one (gluten filled) granola bar a day until their endoscopes in two weeks.  We are gluten-free for only 1.5 weeks, but she's hoping the added "insult" of putting gluten back in will give her all the information she needs.

 

So I'm batting 3 for 3 with my kids.  Good genes in this house!!

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

Celiac.com Sponsor (A8-M):


shadowicewolf Proficient
shadowicewolf
Posted

my other two kids got DX with celiac!

 

Sheesh.

 

The youngest (1.5) was DX on blood work alone since her number was so insanely high (two separate draws with crazy high numbers).  Obviously this puts her siblings on high alert.  Their blood came back elevated, but since it's elevated with a DX sibling it's more of an alarm.  Come to find out that the oldest kid (7) hasn't gained ANY weight in the last year.  She's looking thin.

 

The doctor said that they're clearly both "latent celiacs" and if they don't have it today they *will* get it in the future.  She even said she would be happy to write up her celiac letter for their schools today based on this knowledge alone.

 

As a mom I want all the information since we're clearly never going back to gluten.  So I'm putting them both back on one (gluten filled) granola bar a day until their endoscopes in two weeks.  We are gluten-free for only 1.5 weeks, but she's hoping the added "insult" of putting gluten back in will give her all the information she needs.

 

So I'm batting 3 for 3 with my kids.  Good genes in this house!!

I don't think thats long enough off it to see much change.

 

Look at it this way, now you can make the house entirely gluten free.

africanqueen99 Contributor
africanqueen99
Posted
  • Author

The house is already gluten-free.  It's been scrubbed, new necessary kitchen items purchased, etc.  I told the big kids that they have to eat their granola bar outside to keep all the crumbs out of the baby's reach. 

 

All my kids were "sick" and I couldn't even tell.  I need a crappy mothering award...

shadowicewolf Proficient
shadowicewolf
Posted

The house is already gluten-free.  It's been scrubbed, new necessary kitchen items purchased, etc.  I told the big kids that they have to eat their granola bar outside to keep all the crumbs out of the baby's reach. 

 

All my kids were "sick" and I couldn't even tell.  I need a crappy mothering award...

No, no. None of that.

They were tested because you were dx'd right? Imo, you are a very good mother for getting them tested.

africanqueen99 Contributor
africanqueen99
Posted
  • Author

Nope, they were tested because my youngest also didn't grow. Just having a pity party that two of my kids clearly weren't gaining weight and I blew it off.

I'll move on with that, though. We are on our way to healthier lives.

cyclinglady Grand Master
cyclinglady
Posted

A granola bar sounds like oatmeal which will have little or no gluten (except for cross contamination during processing).  Be sure that it's a cereal bar with just wheat flour or bags of pretzels or Goldfish.  

 

At least you won't have to worry about your older kids getting peeved at the youngest for having the household go gluten free!  

 

Hang in there!

kareng Grand Master
kareng
Posted

I have 2 boys now 17 and 20 & 6 ft and 6'1. They had a couple of years where they didn't really grow. Its normal. It's also hard to tell, when you see them everyday if they are growing. I always bought their clothes a bit big and they often wore them out before they outgrew them. One bought the same size shoes for 2 years and then jumped 3 sizes. They are young and will catch up on their growth now.

At least you know where you stand. And it will actually be easier on them as they grow up. Some kids don't know anyone else with Celiac, your kids will always have someone else around that eats like they do. And family gatherings when they grow up will be soooo much easier. I am the only one in my family and I end up cooking all the food for family gatherings ( gluten-free of course).

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

Celiac.com Sponsor (A8-M):


africanqueen99 Contributor
africanqueen99
Posted
  • Author

A granola bar sounds like oatmeal which will have little or no gluten (except for cross contamination during processing).  Be sure that it's a cereal bar with just wheat flour or bags of pretzels or Goldfish.  

 

At least you won't have to worry about your older kids getting peeved at the youngest for having the household go gluten free!  

 

Good points! I have this box of gluten filled granola bars for a friend that I just went through. It's just organic junk food, but I found "snack bars" and "cheese crackers" - both with wheat flour as the first ingredient. It would have burned me up to have to buy anything considering how much food I gave away!! The middle kid would have loved cheese-its, but I think re-introducing them and then re-stripping-them-away might send him over the edge.

Yeah, they were peeved at the youngest for a bit when we went gluten light. Now they're all in the same boat.

Right now we are the middle of the crankiness of gluten detoxing. Oh how I can't wait for this process again <sarcasm>.

mommy2krj Explorer
mommy2krj
Posted

Hugs mama!

 

My youngest is the diagnosed Celiac in our house as well except his siblings are 15 and 19 years old. I thought it was going to be a much bigger battle with the 15 year old than it has been. I'm thinking that's because HE is feeling better too since we've gone gluten free. His grades are picking up and he's less angry.

 

My youngest was my smallest baby as well. He doesn't seem to grow like either of his siblings. And while I know every kid is different....it's just weird to me to have clothes fit for years at a time instead of having to replace them every couple months (nice on the check book though!) He just recently went up half a shoe size.....otherwise he's been in the same shoe size since he was 3. He's 6. His brother was the complete opposite and grew through everything so fast I couldn't keep up. We replaced shoes every 3 months until this year (really hoping it's a real slow down!) the kid is in a size 15 for shoes! Ack!

 

Anyway, no bad mommy awards! The previous poster who said it's hard to tell if your kids are growing because you see them every day is right. My son's doctor says he's still on the growing curve so he's fine. Um. Ok. Sorry that I'm worried that he is so tiny and not growing even as fast as his sister did. :/

 

We got everyone tested here before we went gluten-free as a household and we all tested negative. So, I'm thinking false negative where my older son is concerned but if nothing else it is probably NCGI. He's beginning to notice how his body feels if he eats gluten after not eating it for a while. Personally, I'm liking the grades he's getting. :)

w8in4dave Community Regular
w8in4dave
Posted

So many people find this stuff out so many years later!! Thank goodness you found out now!! Don't beat yourself up! Be proud that you have got it!! You have got it under control!! You are a great mom!! Thank goodness you found out!! Good luck on the challenge !

tshep Newbie
tshep
Posted

I can relate to how you feel, my three year old daughter was just diagnosed about a month ago.  I feel just awful wondering if that is why she has always been so so thin.  Since going gluten free, for the first time in her life, she will not stop eating!  Just to make a quick trip to the grocery store, I have to pack a few snacks because she wants to eat while we are out.  Once the older ones realize how much better their tummies feel after eating gluten free, I think the crankiness from having their foods "taken away" will dissolve.  My daughter proudly announces to everyone that she is gluten free, and she wont eat that bad gluten because it makes her sick! Smart little kids.  They are in good company in this generation, we have so many wonderful food options nowadays :) Good mama!

Archived

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

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


  • Member Statistics

    • Total Members
      131,945
    • Most Online (within 30 mins)
      7,748
    Miyasato
    Newest Member
    Miyasato
    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

    • 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

    • knitty kitty
      Does anyone here also have Afib

      By knitty kitty · Posted

      @DebJ14, You said "husband has low platelets, bruises easily and gets bloody noses just from Fish Oil  He suggested he take Black Cumin Seed Oil for inflammation.  He discovered that by taking the Black Seed oil, he can eat carbs and not go into A Fib, since it does such a good job of reducing inflammation."   I don't think black seed oil is lowering inflammation.  It's lowering blood glucose levels. Black cumin seed lowers blood glucose levels.  There's a connection between high blood glucose levels and Afib.    Has your husband been checked for diabetes?   Must Read: Associations of high-normal blood pressure and impaired fasting glucose with atrial fibrillation https://pubmed.ncbi.nlm.nih.gov/36750354/  
×
×
  • 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.