Diabetes Type I and possible Celiac

[still..hopeful]

My daughter was diagnosed in October with diabetes and now they think she has Celiac disease. I was looking to chat with anyone who maybe in the same situation and would not mind sharing. I am on overload!!

[mommyx4]

My daughter (7) was diagnosed with T1 almost 3 years ago and Celiac almost a year ago. If you have any questions, please feel free to ask! I'd love to help in any way I can.

[still..hopeful]

Thanks! It will be nice to talk with someone else that is in the same situation. Her test came back positive and she will have an endoscope done on the 8th to confirm. What type of foods do you feed your child for breakfast? Were you advised to have your other children tested for the Celiac? Alyssa does not have a lot of symptoms right now just an occasional stomach ache. I had not even heard of Celiac until we went to her first follow up appt. for her diabetes and they dropped that bomb on us.

[aklap]

Hi Still,

Sorry to hear that. That's a lot to deal with. Believe it or not, this is a good thing that it was caught early on [assuming the blood work gets confirmed]. Gluten not only affects the intestine, but other organs/systems of the body as well. The average length of time for CD diagnosis is 9 years!

Being GF does take some work - there is a learning curve to it, but it's very do able! If you'd like to see a glimpse of what it takes, check out the GF Diet Boot Camp (http://forums.glutenfree.com/viewtopic.php?t=1309). There lots of links to lots of good info - perfect for those just starting out.


Celiac Disease is genetic.

Everyone in your family should be tested. It's common to have multiple autoimmune diseases. 6 - 8% of type 1 diabetes patients also have CD.

If a 1st degree relative (parent, child, sibling) has CD - there's a 1 in 22 chance.
If a 2nd degree (aunt,uncle, cousin) relative has CD - there's a 1 in 39 chance.

http://www.celiacdisease.net/assets/pdf/CDCFactSheets%20FactsFigures%20v3.pdf
http://celiacdisease.net/factsheets


A single negative test will not clear you for life. Testing needs to be periodically. Be aware that CD can present with little or no outward symptoms or around 300+ symptoms (http://celiacdisease.net/symptoms). It can appear as so many other things or nothing at all. This is partly why it's not diagnosed correctly and often overlooked.

[Ellen]

You may want to join the Children with Diabetes celiac email list - sign up here

http://mail.castleweb.com:81/guest/RemoteListSummary/cwd_celiac

[hrermgr]

We were in the same situation as you this month--T's endoscopy confirmed Celiac. We got the news on 12/17/07. We are now changing diets and looking for the best GF foods we can find. We've found some but some is pretty bad. So far, we're doing okay. Feel free to PM me if you would like to chat outside of this forum. Otherwise, I'm usually checking here every day!

Take care.

[WestinsMom]

Finding the foods that work for your family is the hardest part, and the most expensive! Now, a few years into it, I am hesistant to try new products as I don't want to waste the money. But there are so many options on the market and I think almost any food has a GF equivalent...except maybe poptarts! :)

[My_Dana]

My Dana is also T1 for about 1.8yrs and has now show an elevated TTG number for celiac.

As an engineer, I look for causation. Not just treating symptoms. This is the typical medical approach...and it's to our childrens' detriment.

I believe there are reasons for most medical conditions. I don't buy the "it's genetics" answer to everything. It simply cannot explain most out-of-control chronic illnesses in our children (e.g. autism, diabetes, lupus, arthritis, IBS...).

Regarding diabetes and celiac, here is what I have discovered thus far -

Before 1978, all insulin was derived from mainly bovine (cow) and porcine (pig) source. Purification refinement was very good at this point and few had reactions to it. Then in 1978-1983, companies such as Eli Lilly began to produce what they called "human" insulin (mainly for marketing purposes). This was a business decision. It simply costs more to produce animal insulin. The now standard "human" insulin is made from E. coli and yeast bacteria cultures.

One big problem I see...the synthetic "human" insulin does NOT contain any c-peptides.

In normal people, Islet cells produce proinsulin which is then split into insulin and C-peptides. It was believed c-peptides had no purpose and were thus ignored (a common error in modern medicine when they can't figure something out, e.g. the appendix). It is now known that c-peptides DO serve many important functions...especially in diabetics! One is reducing complications such as neuropathy.

More importantly, it was also shown in studies on www.pubmed.com that c-peptide supplementation in diabetic animals showed weight gain and reduce protein excretion through the kidneys. Both are inflammation issues. in other words, the body needs it and T1s are not getting it!

Also, notice that in T1 diabetics it is usually after the honeymoon period a celiac diagnosis is made. This is after the internal insulin production is almost "0" and c-peptide production would also be near "0". Complications can now begin.

I believe this could be a source of problems in some people. And remember, everyone is different so lack of c-peptide may notbe a problem, or may show up years later as neuropathy, or some other D complication. No Dr. will ever know why...

I intend to try animal insulin in Dana and prove or dis-prove my theory.
I encourage others to do the same, and demand it be made available should we want it.

BTW - Our wonderful FDA has made it very difficult to get animal insulin since all US manufactures have discontinued. It only has an 80yr+ track record. However, the UK is not so militant. You can get either. You can also get animal insulin from Canada.

Dana's Dad,
Ed

[WestinsMom]

Very interestind, Ed. Have you been following Allies Voice? (a video blog) She has been pursuing getting c-peptide added to insulin. I guess type2's generally have too much c-peptide, hence not wanting c-peptide in insulin, so everyone could use it. I agree, something is fishy. How are you getting your animal insulin? Are you in Canada, UK?

[BrendaK]

Interesting, theory! How do you explain people that have celiac, but no other autoimmune dieseases? (Like my sister). Who knows, though, my mom has had type 1 for over 40 years and she was diagnosed w/celiac in 1990, and she had probably been on "human" insulins since the early 80's. (Are regular and NPH human insulins? That's what she was on all those years.)

And then people like me who had no problems until this year when I developed celiac and diabetes within months of each other. Actually, the celiac was a problem first, then the diabetes. I started taking insulin about 4 months after going on a gluten free diet.

I did not know that about c-peptides, though. It will be interesting to see more research.

[josmom]

Just got off the phone with my daughters endo (dx 2/07). Her blood work came in at 220, I know need to research what that means. She now has to have the biopsy. My heart is breaking, I feel like it just won't stop. I just want to curl up in a ball and cry. I just don't want to make her change one more thing. I and she will make the changes necessary to keep her healthy thats obvious. But geez just a little break would be nice. I don't know what your reaction is but I need my 24 hour pitty party and then I will move on. I will say a prayer for you as I am saying for myself that it's a strange fluke and that the biopsy comes out negative.

[My_Dana]

Hi all,

Thanks for the tip on the voice blog (Weston's mom). I will check it out.

Of course, my theory with diabetics and celiac does not necessarily explain a non-diabetic getting celiac. Multiple sources and different triggers can result in the same diagnosis. We know this.
Hence the difficulty.

Some people may get things from a genetic predisposition, but as we all know, most illnesses are triggered by some external event. Specifically in children. Could it be vaccines? If so, it further clouds the issue.
I have run through the list of possible external factors (such as food water, air...) and come to the same conclusion. The 68 vaccines (and climbing) kids get to age 18 have something to do with many illnesses. I know by just reading excerpts from the PDR (physicians desk reference), the bible for drug manuf, what we hear from Dr. and the media about vaccines is a far cry from the story in the PDR. This is not a natural way for a body to get immunity. It is false immunity (think "booster"). Even the drug manuf say in the PDR these vaccine may not stop you from getting diseases. If fact, they list the countless things you may get. And it ain't good. No question these vaccines are having an impact on our childrens' heath, and in a bad way. I know from chemistry that mercury and aluminum no matter how you market them are neuro-poisons (why is ADHD a common household term?). It's a downright shame what's going on. It's up to us parents to find the real truth.

Back to my original point - there are reasons for many illnesses and if you dig deep enough you may just find out what it is. We owe it to our children.
Unfortunately, we cannot rely on the medical community to give us the full story.

Dana's dad.
Ed

[My_Dana]

Just got off the phone with my daughters endo (dx 2/07). Her blood work came in at 220, I know need to research what that means. She now has to have the biopsy. My heart is breaking, I feel like it just won't stop. I just want to curl up in a ball and cry. I just don't want to make her change one more thing. I and she will make the changes necessary to keep her healthy thats obvious. But geez just a little break would be nice. I don't know what your reaction is but I need my 24 hour pitty party and then I will move on. I will say a prayer for you as I am saying for myself that it's a strange fluke and that the biopsy comes out negative.

Hi Josmon,

I will keep you in my prayers. If the 220 is the TTG number it indicates an elevation in the TTG enzyme. Around 20 is supposed to be normal. Dana's was ~50 and she has not gained weight in about 3 month. The TTG enzyme is an indicator, but by no means fool proof, of potential celiac. One thing I would recommend if you don't do already is get your little one on lots of omega-3 fish oil (2000-4000mg/day). This provides a natural anti-inflammatory, which is at the root of a lot of diseases.

Take care...and no problem having a pity party for yourself. I know exactly how you feel.

Dana's dad.
Ed

[My_Dana]

Very interestind, Ed. Have you been following Allies Voice? (a video blog) She has been pursuing getting c-peptide added to insulin. I guess type2's generally have too much c-peptide, hence not wanting c-peptide in insulin, so everyone could use it. I agree, something is fishy. How are you getting your animal insulin? Are you in Canada, UK?

Hi Westin's Mom.

I live in PA, but I found a place in Canada where you can buy animal insulin.
http://www.northdrugstore.com/buy-Hypurin-Regular-Insulin-100-iu-ml.html
It is about $125/10mL vial. Not cheep. They say it is available without an Rx. I have to make sure it's not for Canadian residents. A small price to pay for 1-2 months to see if the celiac symptoms are reduced.

Regards,
Ed

[aklap]

tTG levels can be falsely elevated due to autoimmune diseases (http://www.celiacdisease.net/assets/pdf/CDCFactSheetsAntibodyScreening3.pdf). Do you know if the EMA tests were done as well?


It is important to note that some people with Type 1 Diabetes, Hashimoto’s thyroiditis and autoimmune liver conditions can have a falsely positive tissue transglutaminase test. For this reason, it is important that tTG test results in people with these conditions be checked with the EMA test. The physician may nevertheless want to obtain an intestinal biopsy if clinically indicated, even if EMA are negative.


It's far more likely to have a false negative tTG than a false positive in the grand scheme of things. That's why it's always best to run a complete celiac panel to give you a clearer picture. Usually it's just the tTG that is run. :(

I agree, genetics is not the answer to everything. Just because you have the genetic make up for _______ does not guaranty you will contract _________. Yes there are outside forces at play. In CD typically you need gluten and a trigger...something that sets your body off...infection, illness, surgery, pregnancy, some will say stress. Sure you could probably add vaccines. Go talk to a parent of a child that has autism - many times they will say it started after a vaccination [which of course mainstream medical will most likely pooh-pooh the idea].

I also agree mainstream medicine is not always about finding the cause, but rather treating the sx's. Sad to say, if the patient is not proactive in his/her own healthcare, said patient maybe be in for a long uphill battle. 3-4 docs I saw couldn't figure out what was wrong with me...it was only after my researching efforts did I come across gluten [FWIW, I am not diabetic]. Once gluten was removed, I had my life back.

Keep reading and keep learning. Knowledge is Health!

[My_Dana]

tTG levels can be falsely elevated due to autoimmune diseases (http://www.celiacdisease.net/assets/pdf/CDCFactSheetsAntibodyScreening3.pdf). Do you know if the EMA tests were done as well?


It's far more likely to have a false negative tTG than a false positive in the grand scheme of things. That's why it's always best to run a complete celiac panel to give you a clearer picture. Usually it's just the tTG that is run. :(

I agree, genetics is not the answer to everything. Just because you have the genetic make up for _______ does not guaranty you will contract _________. Yes there are outside forces at play. In CD typically you need gluten and a trigger...something that sets your body off...infection, illness, surgery, pregnancy, some will say stress. Sure you could probably add vaccines. Go talk to a parent of a child that has autism - many times they will say it started after a vaccination [which of course mainstream medical will most likely pooh-pooh the idea].

I also agree mainstream medicine is not always about finding the cause, but rather treating the sx's. Sad to say, if the patient is not proactive in his/her own healthcare, said patient maybe be in for a long uphill battle. 3-4 docs I saw couldn't figure out what was wrong with me...it was only after my researching efforts did I come across gluten [FWIW, I am not diabetic]. Once gluten was removed, I had my life back.

Keep reading and keep learning. Knowledge is Health!

Hi -
I don't think Dana had an EMA. What exactly is that?

Dana's dad
Ed

[aklap]

Hi Ed,

EMA is Anti-endomysial antibodies (EMA) - IgA

Here's the Complete Celiac Panel (http://www.celiacforums.com/viewtopic.php?p=1021). You'll see some of links below in the Complete Celiac Panel post.

http://www.celiacdiseasecenter.columbia.edu/C_Doctors/C05-Testing.htm
Lack of concordance of endomysial antibody and anti-tTG

The discovery that the enzyme tissue transglutaminase (tTG) was the autoantigen for the endomysial antibody [20] prompted the development of ELISA testing for tTG. This allowed automation of the test for the detection of anti-tTG. The measurement of the EMA required a cumbersome, observer dependant immunoflourescence technique. As a result many laboratories have replaced the endomysial antibody with the anti-tTG test. However the test does not measure the same thing and there are differences in preparation of the antigen (tTG), either tTG from guinea pig liver or human tTG, preparation of the kits and cutoff values for each patient population. In addition there may be other antigens, apart from tTG , for the EMA [21]. The EMA is certainly the gold standard in the serologic diagnosis of celiac disease, for it is virtually 100% specific. However multiple cases have demonstrated that patients may be positive for one (either EMA or anti-tTG) and negative for the other, i.e. they lack 100% concordance [22-25]. As a result reliance on the anti-tTG as a single test will underestimate the presence of celiac disease and both the EMA and the anti-tTG should be performed.

http://www.prometheuslabs.com/Resources/Celiac/PRM16066_Celiac_CVA.pdf

[still..hopeful]

I am sorry to hear that Josmom. My heart goes out to you. I don't think there has been a day that has gone by that I don't find myself crying at least once. I think I feel every emotion possible at this point. I keep thinking..ok what next. I hate that I am fixing to have to take away everything she likes again. I feel like I am being punished for something. She told me she would like to be four again because when she was 4, she did not have to take shots. Things like that just break my heart. I know there is a reason for everything, but it is still hard to understand! I am still holding out that her endoscope comes back ok and this was just a nightmare.

I have a question for some of you...If you have diabetes and celiac, can you still have Crystal Light and diet soft drinks? We live on Crystal Light right now. Thanks. This sight has been a tremendous help.

[WestinsMom]

Yep, I haven't found a pop that wasn't GF and Crystal Light is fine

[aklap]

Crystal Light is a Kraft product. One very helpful piece of info to know is that Kraft has very good labeling practices. By law they only have to disclose WHEAT - luckily, they will also disclose barley, rye and oats. So, if you read a Kraft product label, you can pretty tell right off if it's GF or not.

Still: I can understand how you feel. It does feel like your whole world is crumbling down around you. Been there - done that! Take a deep breath, life will go on and it will be fine. It's hard to see that right now, but it will be. Take heart, while being GF has a steep learning curve, it is very doable. It just takes time to figure it all out. The good news is that there are GF replacements for all most all foods.

I hope you get the answer you are looking for! Good luck!