Gluten Free Diet

Type 1 and LADA
1

Our daughter is 12 and in her 5th year of T1D. She is NOT celiac. But we have often noticed that her numbers are super good with rice and not so much with wheat. So when this study in British Medical Journal about a child going in to Remission after gluten free diet got published
(Ref: http://www.ncbi.nlm.nih.gov/pubmed/22729336) - I got curious.
Although remission is different from Cure, I got hold of the paper through one of my friends in Medical Research. Went through it and it is pretty interesting - it states that number of GAD antibodies and Islet antibodies remained unchanged for 20 months (means they were still present) but the child required no insulin. To me it says that the boy probably was in honeymoon and as soon as the gluten was stopped for some reason the attack on pancreas also stopped despite the antibodies being present - so is there some connection here?
So I started my daughter on a wheat free diet - Note that she does not miss much. I make every single thing she used to eat without wheat - pizza, bread, rolls and you name it. This is her 4th week without wheat. Her numbers have truly been great so far. She was experiencing wild swings in her numbers due to puberty and they are like calm waves now. She has a CGM with her and does blood based test before every meal. Although I am not suggesting remotely that this is towards a cure - but I am certain that her insulin sensitivity has far increased AND I am totally surprised that the medical community does not even hint the possibility of this happening. May be my child is Gluten-Sensitive if not Celiac..
BTW, I also read in this paper that -"Up to 10% of patients with T1DM also have celiac disorder and, interestingly, the two diseases are by far the
most common observed combined, if diabetes is the first
to appear, and seldom if celiac disease develops fi rst and
gluten-free diet is implemented" - which is quoted from -Cosnes J, C ellier C, Viola S, e t al. ; G roupe D’Etude et de Recherche Sur la Maladie Coeliaque . Incidence of autoimmune diseases in celiac disease: protective effect of the gluten-free diet. Clin Gastroenterol Hepatol 2008 ; 6 : 753 – 8

I am going to observe her for next few months before introducing wheat again.

Would love to hear from other T1Ds with similar experiences

2

There have been times in my life as a T1 were I have existed on fruit, salads and vegetables, no gluten whatsoever. I still needed insulin. Perhaps it is different in children or these children in particular. I would tend to agree that a gluten free diet is better. Hope the bgs stay stable for your daughter.

3

Hi Wonder. I have not had your daughter's experience, but I do have Celiac Disease (and LADA/Type 1). The two conditions arrived at the same time for me.

I was very unhappy to read Consumer's Union last issue's report on arsenic in rice, esp. in brown rice, which includes the flours. The Today show covered this report. I am now limiting the amount of rice products I eat in a day and I won't eat anything that has rice as it's first ingredient on the label. In home baking, sorghum works well, and I also like buckwheat (no relationship to wheat), both of which are non-allergenic for most people.

Both insulin-sensitivity and Celiac have some really bad consequences. In case of either of those conditions, I certainly encourage you to keep her diet gluten-free. A good source of info on allergies is Living Without Magazine (& they have a website), although it won't address insulin use. Best luck.

4

I am T2, have had eczema for 40 odd years, but since I have gone low carb to keep my blood sugars down I have noticed that I am not suffering from eczema, am washing up without wearing both cotton and rubber gloves. I rarely eat bread or products containing wheat any more and am convinced that it is due to this restriction that my eczema has cleared up.

5

There is some speculation that wheat may somehow be a trigger or involved in the onset of T1. Dan Hurley in his book "Diabetes Rising" explores some of this. But there doesn't seem to be a suggestion that removing wheat can undo the triggered onset of diabetes.

And it is true that if you have one autoimmune condition like T1, your chances of getting another autoimmune condition like celiacs or Hashimotos is markedly increased. In fact there is a name "Autoimmune Polyendochrine Syndrome" or "Polyglandular Autoimmune Syndrome" for some of these cluster conditions when you have more than one autoimmune condition.

But the real concern is that some of us do appear to be more sensitive to wheat. I don't test positive for Celiac, but my blood sugar rises much higher when I eat wheat. I have to essentially double count the carbs in wheat products and these days eat an almost wheat free diet. It is quite possible your daughter is gluten or wheat intolerant (not celiacs) and her reaction to wheat causes much higher blood sugars. Remove the wheat and her blood sugars may be better.

But the truth is, improved control can occur for any number of reasons, honeymoon, puberty, removal of wheat or just random acts of god. It doesn't do any harm trying a wheat free diet, but you need to be aware that observed changes may not be removal of wheat, it may be something else.

6

My partner has very good sugar numbers that are almost flat through the day when he avoids carbs and sugars altogether. He arrived at this point after learning he cannot tolerate gluten/ is celiac (excatly which is not clear), cutting out wheat and then finally cutting out most fast carbs. He is probably too old (39 yrs, T1 diabetic for 29 years) for this to have any effect like reversing his T1, but you may want to consider that a diet low in carbs altogether might help even more. The medical industry is known for pushing fast insulin onto people encouraging them to eat carbs ("you can eat anything, just take insulin for it") whereas eliminating fast carbs keeps your sugars at a manageable level with much less insulin use.

7

Personally, I feel that moderation is everything when dealing with diet, and here in the U.S. the average person eats way too many wheat-based carbs. It makes sense that eating too much of anything will cause issues, whether you have diabetes or not. This is just my opinion.

Here's my experience - a few years ago, I started developing some really bad stomach aches accompanies by horrific diarrhea. Went to a doctor and they did a blood test for celiacs and many other things. I DID NOT have celiac (at least, not according to my bloodwork), but I did have a pretty significant wheat allergy (again, according to the bloodwork). I began to think about how all my stomach aches/episodes did seem to correlate to consuming wheat products (including beer). I also thought about how over the past decade I had really started to consume far more wheat products than ever before in my life. My A1C had also steadily increased (although this was due to a variety of factors, not just my increased wheat/carb consumption.

So, I cut back on wheat. I didn't cut it completely out, but I went back to a lower-carb way of eating and consumed wheat products in far greater moderation. I checked labels for wheat-containing products and avoided them whenever possible.

My BGs steadily improved, my A1C came down a little, and the stomach aches stopped. AGAIN, I did not eliminate wheat completely, but greatly decreased the amount of it I was consuming.

By going gluten free (or even just eliminating wheat), you are automatically removing foods that can be problematic for BG control. Wheat and its associated products often digest more slowly and lead to wackier BGs. If I have to choose between rice and bread, I know I can more easily bolus for rice than bread. Bread, pasta, cereal (all wheat products) wreak HAVOC on my BGs. Rice isn't the best, but it's better for me.

Obviously, these dietary changes have not cured me. I'm a type 1 diabetic and still require insulin to stay alive. BUT, I am able to reduce my insulin significantly when I stay away from wheat products.

This is just me -- I think all of us with T1 diabetes need to experiment and find what works best for us as individuals. We are all unique and have variations. You may find that going gluten-free gives your daughter smoother BGs over the course of a day. If it works and her numbers look good, go with it! Sometimes why something works just isn't important. The nice thing about having T1 diabetes is that we have the tools to evaluate our own treatments and make decisions.

8

Yes my daughter basal rates have not changed but her numbers are more predictable and within range - but definitely on insulin.

9

I've had type 1 for 19 years (diagnosed at age 11). Recently, I started having digestion issues, I was tested for Celiac disease via a blood test, and it came back negative. My endo suggested trying to eat gluten free for awhile to see if it helps, because apparently some people have a gluten intolerance that doesn't necessarily test positive as celiac disease. I started eating gluten free and everything has been SO much better! My sugars are easier to control, my digestion difficulties disappeared, etc. The definitive test for celiac disease is an intestinal biopsy, and I guess I could get that done to see if I actually have celiac, but since I feel so much better not eating gluten any way and I'm going to stick with this diet, I don't really feel the need to get the biopsy. But that's just me.

10

Similar situation as my daughter..I wonder why all doctors do not suggest getting gluten sensitivity tests done in the first place- will give those sensitive patients a chance for better control.

11

My little one also complained stomach aches often - seems to be gone now. I feel gluten sensitivity can lie anywhere in the scale between not sensitive to being celiac. But if a person is sensitive and continues to have wheat products specially store bought breads( which have extra gluten added), he or she is stressing the body to such an extent that the immune system starts to act haywire.
Mathematically expressed:
Probability of Immune reaction = function(GlutenSensitivity * Gluten Consumed)
So depending on where your sensitivity is you can adjust your gluten consumption.
Wondering if there is any research on this.

12

Thanks for the info..I will try and get hold of this magazine

13

Hi Wonder. The website is www.livingwithout.com, from which you can order the magazine if you wish. The best book I've ever read on Celiac is "Celiac Disease, A Hidden Epidemic," by Peter H. R. Green, M.D., available at Amazon.com. Dr. Green is the director of the Celiac Disease Center at Columbia Univ.

14

My son was diagnosed with T1D in August. In the months previous to that he would get stomach cramps, diarrhea,and nausea after eating pizza or even moderate amounts of wheat products. I thought perhaps he was developing a sensitivity to wheat. He was tested for celiac, but the tests were negative which surprised me. After reading some of the comments, it seems that negative blood tests are not conclusive.
Since my son's T1D diagnosis he has been eating low carb and avoiding wheat. His digestive issues have been resolved. It is certainly easier to maintain good bgs going low carb, and to be on the safe side I think it's better to eliminate wheat altogether. The introduction of the gliadin protein and other genetic modifications into wheat may well have spoiled what was once a good food.

15

My daughter eats the same amount of Carbs as before - we did not reduce that but just removing wheat made things better