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12 Year Old Diabetic


LYNKADY

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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


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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


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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.

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    • Aretaeus Cappadocia
      I wanted to respond to your post as much for other people who read this later on (I'm not trying to contradict your experience or decisions) > Kirkland Signature Super Extra-Large Peanuts, 2.5 lbs, are labeled "gluten free" in the Calif Costcos I've been in. If they are selling non-gluten-free in your store, I suggest talking to customer service to see if they can get you the gluten-free version (they are tasty) > This past week I bought "Sliced Raw Almonds, Baking Nuts, 5 lbs Item 1495072 Best if used by Jun-10-26 W-261-6-L1A 12:47" at Costco. The package has the standard warning that it was made on machinery that <may> have processed wheat. Based on that alone, I would not eat these. However, I contacted customer service and asked them "are Costco's Sliced Almonds gluten free?" Within a day I got this response:  "This is [xyz] with the Costco Member Service Resolutions Team. I am happy to let you know we got a reply back from our Kirkland Signature team. Here is their response:  This item does not have a risk of cross contamination with gluten, barley or rye." Based on this, I will eat them. Based on experience, I believe they will be fine. Sometimes, for other products, the answer has been "they really do have cross-contamination risk" (eg, Kirkland Signature Dry Roasted Macadamia Nuts, Salted, 1.5 lbs Item 1195303). When they give me that answer I return them for cash. You might reasonably ask, "Why would Costco use that label if they actually are safe?" I can't speak for Costco but I've worked in Corporate America and I've seen this kind of thing first hand and up close. (1) This kind of regulatory label represents risk/cost to the company. What if they are mistaken? In one direction, the cost is loss of maybe 1% of sales (if celiacs don't buy when they would have). In the other direction, the risk is reputational damage and open-ended litigation (bad reviews and celiacs suing them). Expect them to play it safe. (2) There is a team tasked with getting each product out to market quickly and cheaply, and there is also a committee tasked with reviewing the packaging before it is released. If the team chooses the simplest, safest, pre-approved label, this becomes a quick check box. On the other hand, if they choose something else, it has to be carefully scrutinized through a long process. It's more efficient for the team to say there <could> be risk. (3) There is probably some plug and play in production. Some lots of the very same product could be made in a safe facility while others are made in an unsafe facility. Uniform packaging (saying there is risk) for all packages regardless of gluten risk is easier, cheaper, and safer (for Costco). Everything I wrote here is about my Costco experience, but the principles will be true at other vendors, particularly if they have extensive quality control infrastructure. The first hurdle of gluten-free diet is to remove/replace all the labeled gluten ingredients. The second, more difficult hurdle is to remove/replace all the hidden gluten. Each of us have to assess gray zones and make judgement calls knowing there is a penalty for being wrong. One penalty would be getting glutened but the other penalty could be eating an unnecessarily boring or malnourishing diet.
    • trents
      Thanks for the thoughtful reply and links, Wheatwacked. Definitely some food for thought. However, I would point out that your linked articles refer to gliadin in human breast milk, not cow's milk. And although it might seem reasonable to conclude it would work the same way in cows, that is not necessarily the case. Studies seem to indicate otherwise. Studies also indicate the amount of gliadin in human breast milk is miniscule and unlikely to cause reactions:  https://www.glutenfreewatchdog.org/news/gluten-peptides-in-human-breast-milk-implications-for-cows-milk/ I would also point out that Dr. Peter Osborne's doctorate is in chiropractic medicine, though he also has studied and, I believe, holds some sort of certifications in nutritional science. To put it plainly, he is considered by many qualified medical and nutritional professionals to be on the fringe of quackery. But he has a dedicated and rabid following, nonetheless.
    • Scott Adams
      I'd be very cautious about accepting these claims without robust evidence. The hypothesis requires a chain of biologically unlikely events: Gluten/gliadin survives the cow's rumen and entire digestive system intact. It is then absorbed whole into the cow's bloodstream. It bypasses the cow's immune system and liver. It is then secreted, still intact and immunogenic, into the milk. The cow's digestive system is designed to break down proteins, not transfer them whole into milk. This is not a recognized pathway in veterinary science. The provided backup shifts from cow's milk to human breastmilk, which is a classic bait-and-switch. While the transfer of food proteins in human breastmilk is a valid area of study, it doesn't validate the initial claim about commercial dairy. The use of a Dr. Osborne video is a major red flag. His entire platform is based on the idea that all grains are toxic, a view that far exceeds the established science on Celiac Disease and non-celiac gluten sensitivity. Extraordinary claims require extraordinary evidence, and a YouTube video from a known ideological source is not that evidence."  
    • Wheatwacked
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    • trents
      I don't know of a connection. Lots of people who don't have celiac disease/gluten issues get shingles.
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