November 19, 2010 at 2:52 pm #7889
I am a 33 yr old female and have been a type 1 diabetic since I was 8. I am on an insulin pump and I am in good control. About 10 years ago I started having strange GI symptoms that started with a sulfur tasting burp and it turned into explosive diarrhea and nothing would stop the diarrhea except for flagyl, an antibotic.
I have been to about 10-20 GI docs and most blame it on my diabetes. I was taking flagyl about 3 times a year (when I ate sugary foods or under stress). But recently I have had to take the medication every week. So I went to another GI doctor and he asked me questions about diabetic gastroporesis……I do not get full easily, my sugar levels match my inslin levels after meals…..I sound nothing like diabetic gastroporesis. I did a gastric emptying test. They gave me wheat toast and an egg with isotopes and they said the toast was not going down and just sitting there. So he told me to take prevacid, go n a low fat diet, and eat a lot of white flour foods as they are more digestable.
I didn't buy it. I KNOW I do not have diabetic gastroporesis.
I do have a tsh of a 4, my hair is falling out, I have poor tooth enamel and get a lot of cavities despite eating low sugar and brushing and flossing. Something is wrong with me, but what????
I heard about a Dr here locally named Dr. Gonino. He did the gene test on me and it turned out that I am positive for HLA DQ 2 and 8. He told me to stay away from gluten, to do colonics, coffee enemas, a total body cleanse, etc
I am doing all of this. I am not off of all grains, just the typical gluten free diet. I am still getting strange spells where I feel almost like I have no electrolytes in my body, can't catch my breath- almost like an anxiety attack but I have no anxiety issues.
Today I had my 1 and 3 year old in the car with me and I could not sit up I felt so horrible. I just don't know what to do anymore.
I am researching grainfree for the family. My oldest son had signs of autism when he was 1 and I have worked hard biomedically with him and he is turned around and typical, but has high levels of lead and mercury. He also can't tolerate phenols, vitamin A, and corn makes him hyper aggressive- also a tsh of a 9. My youngest is typical. But we are all “gluten” free, but I am looking into the real gluten free now.
So I hope I am in the right place. All we can do is try. It is hard with children- all they want are crackers and cokies and chips.
Do I need to have my kids tested genetically? Is there another doctor around here who is a colleague of yours Dr. Osbourne? I love Dr. Gonino, but he just said to stay off of gluten and did not mention the other grains. And since my youngest has a large belly, red hair , blue eyes, and fair skin, he said a gf diet should prevent him from developing t1 diabetes.
Thanks for your help,
AshleyNovember 20, 2010 at 8:03 am #8839
It is hard with small children, there is a great book out there called “the Gluten-Free Almond Flour cookbook”, by Elana Amsterdam. There are cakes and cookies and cupcakes and everything in there. She also has a cupcake cookbook, she uses agave to sweeten things. Her recipes are very good, there is even a sandwich bread in there that I like, it isn't like the old yeast breads, but it is good. You will be surprised how many things you can make. She has a website called elanaspantry. Keep searching for grainfree recipes and you will be surprised what you find online. Good luck and you can do it. There are others on here with small children too and they will tell you it is so worth it!
LoriNovember 20, 2010 at 3:55 pm #8842
Hi Ashley, I think you ARE in the right place. I am 34 and have four kids (7, 5, 3, 1). The five year old is diagnosed celiac and that is what led us on this road to good health, a blessing in disguise for sure. I am working on getting them all grain free too. My three year old son stutters and I definately feel there is a dietary connection, although his ped and a speech pathologist have said no. I myself have been grain free for about six months now (after having been traditional gluten free for a year before that). My husband and kids are traditionally gluten free, but 90% grain free also. We have also eliminated sugar 99% (Halloween and suckers from Great Grandpa). My son had gone about 3-4 months without much stuttering at all, then right after Halloween he started again. He didn't have much candy at all, but I think maybe all it takes is that little extra to shock his system, I am looking into possibly having him tested for candida as he also has major sugar cravings.
Elanaspantry has been wonderfull for me, good healthy replacements for “normal” treats, the agave tastes great and has a low glycemic index so would be wonderful for your Type I diabetes. My husband is reluctant to give up some of the processed gluten free convenience items such as pre-made bread (Udi's) and Tinkyada pastas, and a few other “gluten free” junk foods, but I think he will come around eventually so I am trying not to force it too much. In six months we have cut back tremendously from what we used to do. It's a lot to take in at first, but it's a process. For us it has been a complete lifestyle change, but homecooked healthy meals is the way to go. We used to eat out 3-4 times a week, mainly for convenience, so unhealthy, but we were socially engrained to think this was OK, even RIGHT. At first you do feel bad telling the kids “no” when you pass by McD's or Pizza Hut, but they get so used to it and then they stop asking. Your kids are young enough they will adapt very easily. Just keep giving them a variety of fruits and veggies. We shop for fresh produce 2-3 times a week. We have explained so many times the health reasons for our choices, I think they are actually getting it. I'm hoping by the time they are old enough to make their own decisions they will make the right ones. It takes a lot of organization and pre-planning, especially if you have to travel at all. Sometimes I feel like I spend all my free time either shopping, cooking, or cleaning up but it's worth it for their health.
I have watched all Dr. O's videos and I have to say they have helped me tremendously. The hardest part is socially, which is covered in the video. We do homeschool also, so I think that makes it much easier. My thoughts are teach them while they're young because the older they get the more difficult it's going to be.
BTW, we got all the kids genetically tested that way we KNOW (less likely to give in to temptations). That way too we have a piece of paper to show them if they ever ask or doubt why they should be doing this. Also I have sometimes found it helps when explaining to others when they ask why we or the kids can't eat whatever at a potluck or a party. Once you say genetic test=gluten intolerance they just say “Oh” and leave you alone about it.
I had a really hard time finding a doctor to help me, but finally found one that is considered a “functional medicine” specialist, not sure if that would help you but it's worth a google. I hope you find your path to health here, keep us posted.
JackieNovember 21, 2010 at 1:44 pm #8844
Thank you for sharing your story with us. You are definitely in the right place. Our focus here is the TRUE gluten free diet. If you get a chance, watch all of the video tutorials. These are essential in putting you on the right track and helping you re-establish your family's health.
Welcome to the Gluten Free Warrior Tribe!
All the best,
Dr. ONovember 21, 2010 at 6:59 pm #8850
Thanks everyone. I love Elanaspantry. However, my son has IgG sensitivities to 43 foods, including an outrageously high number to coconut. He is also salicyclate sensitive, meaning he can not tolerate apples, almonds, peppers and phenolic food svery well or else he gets hyper aggressive and breaks out in hives. SO I am completely stuck here. I can't do elanaspantry due to the almond and coconut (I so wish we could). His gut has been healing for a while now, but this kid all he wants is sugar all the time. He can not tolerate most fruits and some veggies.
We do plan to chelate soon, so I am hoping this will help him. But how do I get this child fed properly?November 21, 2010 at 11:22 pm #8851
Check out this site, it may help you with meal ideas. I have purchased a few of her menu plans (very reasonable, low cost) and they have been great. She uses almond flour too but says you can sub with any nut/seed flour which you can make easily at home.
I am thinking the sugar cravings must mean yeast overgrowth? Crackers, cookies, chips need to just not even be an option, get them out of your house, that's what we had to do. Our kids have gradually adapted to fruits/veggies. Keep trying many different things, eventually he'll like something. I know kids can be stubborn but the worst thing to do is give in.
I am thinking (and maybe Dr. O can weigh in here) that once you get your son completely gluten free, and his gut heals that some of his other intolerances will go away and it will be much easier for you. What about probiotics and/or digestive enzymes for him? I'm not sure what chelating is, sorry.November 23, 2010 at 11:19 pm #8852
Welcome to the forum. I'm new too. You said you were going to start chelating soon. Have you read information on Andy Cutler's chelation protocol? It is really interesting and I think it makes a lot of sense. It eased my fears about chelating and made me feel like I was doing it safely. I didn't feel safe doing IV chelation.
Can your son tolerate cashews and honey? If so, I have a recipe for sweets that is pretty good.
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