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

12 Year Old Diabetic


LYNKADY

Recommended Posts

LYNKADY Newbie

I HAVE A 12 YEAR OLD DAUGHTER WHO WAS DIAGNOSED LAST MAY AS A TYPE 1 DIABETIC, TODAY AT HER DOCTORS APPT. THEY INFORMED ME THAT SHE POSSIBLY HAS CELIAC DISEASE. I DONT REALLY UNDERSTAND TOO MUCH HE SAID TO GO HOME AND THE DOCTOR WILL CONTACT ME AND SET UP FOR A SCOPE TEST! I AM SCARED TO DEATH, I HAVENT EVEN GOT OVER THE DIABETIC PART AND NOW THIS. SHE STILL STRUGGLES OVER THE THINGS SHE CANT EAT AS A DIABETIC AND NOW THIS. CAN ANYONE HELP! HOW DO I EXPLAIN THIS TO MY DAUGHTER? SHOULD MY HUSBAND AND I BE CHECKED?

THANK YOU


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



Celiac.com Sponsor (A8-M):



MelInWV Newbie

Hello. I am new to this group as well, but my ten yr old son also has Juvenile Diabetes and we are doing an endoscopy on Friday to find out if he has Celiac. I know how you feel. It is so sad, our kids put up with so much already - needles all day long, every single day, watching what they eat - and now this on top of it!

I am hoping against all odds that it's just a big mistake, but the reality is that Diabetes and Celiac are connected somehow, and my MIL has Celiac as well. At least I have her as a support!

It breaks my heart to watch him go through all this. Kids have enough to worry about without chronic disease to add to it. Not to mention what we go through as parents trying to help them manage it!

Anyway I'm here to talk and commiserate. I don't know an incredible amount about the Celiac yet, but I have talked with a lady here in my town who has a daughter with it. She has managed to work around it and find suitable food substitutions and makes me feel like we will live through this!

Good luck to you and I wish the best for your child.

celiac3270 Collaborator

I'm sorry to hear about this. Celiac disease and diabetes are related, however, in that celiacs are more likely to get diabetes. To answer your questions, if your daughter tests positive, everyone in your family should be tested. Celiac is genetic, so someone in your family has had it before your daughter (you or your husband, grandparents, great grandparents--it has to come from somewhere, even though it may skip generations).

For research, I'd read some articles from the celiac.com site index. If she is diagnosed, this is a good spot to find ingredient and food lists, articles, etc.

I'm not diabetic, so I can't help you with integrating the gluten-free and diabetic diets.

Boojca Apprentice

I don't have the diabetes to deal with, my MIL does, but I do have a 3 year old son recently diagnosed with Celiac and I can tell you that it's COMPLETELY overwhelming at first, you think they'll never eat anything "good" again. Now, 8 months after his diagnosis, I am here to tell you how wrong that is! You will feel like a pro at this very soon if you stick with the message boards and reading labels. My MIL does all her baking with Splenda and none of us can ever tell the difference, so that should help when doing your gluten-free baking (if, indeed, Celiac is diagnosed)

Bridget

brdbntL Rookie

Hi,

My daughter is 4. She was diagnosed with diabetes at 22 months (that was June of 2002) and then we found out she has Celiacs in Feb 2004. It is very overwhelming at first, but it is very managable. Even though some days I want to pull my hair out, but other days I know we have it under control. I have been fortunate enough to find a great Health Food store in my area that carries gluten free. If you need to talk or vent or have any questions please feel free to email me. I don't have all the answers, but I know how hard it is.

Laura

And just a sidenote about sugar free maple flavored syrup- a life saver when it comes to pancakes and waffles. Cary's has carmel color which is on the no-no list for celiacs, but I spoke with the gastro and endo and they both agreed as long as she didn't have any symptoms that the benefit of the low carbs outweighed the possibility that the carmel color has gluten. Her original test for transglutamanase was 56 after being gluten-free for 10 months it was less than 3(which is awesome according to docs), and she had been having the syrup throughout the 10 months. And I have a really good gluten-free pancake recipe if you are interested. Even my non celiac parents liked them.

Hearts Apprentice

I have a 9 year old boy who just got diagnosed with diabetes and will likely test positive for celiacs. He screened positive for it and we'll do some bloodwork this weekend to confirm it. As we travel this road, I have found everyone knows a child with diabetes and some people know of celiac disease but I've yet to find a person who has a child with both. At this point, we are dealing with the daily insulin shots etc but I am at a loss as to where to start with the gluten free. If anyone can give some advice, I'm all ears. If anyone knows of a boy who has both conditions around my son's age, maybe I can start to believe he's not alone .. maybe even someone he might be interested in talking to someday. Thanks

Boojca Apprentice

BRDBNTL,

If you call the company they may be able to tell you what the base of the caramel coloring is. CC made in the USA is generall sugar based, but made outside the USA has a higher chance of being barley based. But they should be able to tell you either way what it's made from.

Bridget


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



Celiac.com Sponsor (A8-M):



brdbntL Rookie

Thanks Bridget,

I will call and ask what the carmel color is made from. I initially asked if it was gluten free and got the legaleze- we can't say for sure because of.... Sounds like I was asking the wrong question.

Laura

Boojca Apprentice

Yeah, most companies these days are so afraid of getting sued that they will hardly ever say something is gluten free. Often what they will say is that they do not contain any gluten-containing ingredients but they cannot guarantee the glute-free status of any of the ingredients they obtain from other companies. I understand why they do it, but boy is it frustrating!!!

There is a gluten-free mainstream product list at the Celiac support group at www.delphiforums.com and it's an AMAZING list and I know I've seen syrups on there, including the "lite" versions of them. Check it out!

Bridget

tarnalberry Community Regular

Not being diabetic, I am not a lot of help there, but I wanted to let you know that the lifestyle changes need not be overwhelming. I'm a big proponent of eating gluten-free naturally - not buying processed, specially-made gluten-free foods, but rather buying, eating, and cooking whole foods that are naturally gluten-free. When you do that, it's easier to think about the fact that you're only eliminating four food items from your diet. All the natural fruits, vegetables, legumes, nuts, naturally gluten-free grains (like corn, rice, buckwheat, quinoa, etc.j, and meats that aren't altered in processing are gluten-free. I'm not sure the extent of the impact from her being diabetic will affect how much fruit and grain she can have, of course. It will take some time to learn how to do all the cooking from scratch with gluten-free ingredients if you aren't used to it, but it is a lifestyle change, and it's going to take a bit of time to get the hang of the gluten-free diet.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - marion wheaton replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?

    2. - trents replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?

    3. - BlessedinBoston replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?

    4. - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      14

      My only proof


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,412
    • Most Online (within 30 mins)
      7,748

    Susan Marble
    Newest Member
    Susan Marble
    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

    • marion wheaton
      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
×
×
  • 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.