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Hello, I will go by Tio (no not the Spanish meaning) I am 25. For as long as I can remember I have been a very sick child, and was always diagnosed as IBS, Depression, and just standard year round allergies. Actually had a Celiac Panel done back in Aug 2011 it came back negative because the doctor said I was not showing signs of malnutrition from the blood test and I was made to fast before the test (not sure why because even the pathologies was surprised doc said to fast and told me that fasting before a celiac test defeats the purpose because the food needs to be in the body to show up). That aside I believed the doctor saying it was just depression as many previous doctors have said it was. Till two weeks ago my Mom got back from a vacation with some friends and one of the ladies she went with had all the same symptoms as me and she had many blood tests come back negative because they always had her fast before them. So finally I started a gluten free diet about two weeks ago seems to be almost a 180 flip from how I felt before. I have so many symptoms, but some seem to be different from most I have read. Some of mine are within minutes after eating gluten I start coughing because my allergies start acting up start stuffing up and hard time breathing, never been able to sleep for a very long time started having to take sleeping pills back in Aug, anxiety, bloating, and then all the stomach discomfort and diarrhea.

So now here I am because as far as I know I am the only one in my family that has this problem though now that I look back some on my Father's side of the family could have had this was just never diagnosed, both my father's parents died from colon cancer, and cousin has Crohn's that has now turned into Colon cancer.

So any tips would be very helpful, specially with label reading. So far I just go into the grocery store with the mind set if I can't read the label I won't buy it. So all I buy is meat, veggies, fruit, potatoes and rice. It just gets confusing when it comes to the shampoos and all that.

~Tio~

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Actually, you're right about those labels-simply walk by them and buy natural, whole foods. When you start to go gluten free, it's much better to eat whole foods: fruits, vegetables, dairy, meat, nuts, etc. After a few months, you can feel free to buy certified gluten-free crackers, breads, and other processed foods. Don't bother with the labels--just buy the foods that say that they're certified gluten free.

As for shampoos, Desert Essence Organics' line of shampoos and creme rinses are all gluten free.

Tio, it appears that you're one of us....

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Hi Tio!

Welcome to the board. I am glad you were able to find out for yourself what is bothering you despite unreliable experiences with the healthcare system. So many of us have experienced similar troubles. As far as advice goes, you are probably doing the best thing by eating fresh fruit and vegetables to start out with. I wish I had done that because I had other sensitivities surface when I went gluten free and couldn't figure out what it was. Besides that, eating whole foods cuts down on risk for cross contamination. When you verge into buying processed gluten free foods, do yourself a favor and only buy things that are certified gluten free or made specifically in a facility that avoids top allergens or gluten.

Shampoo is kinda debatable I suppose; it is impossible to avoid traces of gluten running down into your mouth, so I personally think it is best to have that gluten free too. Hand soap, I use dawn with no problems that I can see. I use plain shea and cocoa butter lotions.

Well that's a start I hope. You will learn how sensitive you are and what brands you can trust and not trust, but just in case you do not know, most of us seem to become more sensitive as our immune systems recover and strebgthen. Do not be shocked or mislead if that happens to you.

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I hope I am okay with the shampoos and conditioner I have, I don't see gluten or wheat on the label. Its nice that my mom is being helpful also, she is keeping gluten free snacks in her house for when I come to visit and started cooking gluten free meals that I can eat when I am there. As far as all the whole foods that was not so hard for me, my mom and I have always been cooking from scratch people, and I was never really a person that ate out much. I also can't stand fast food. It is just I have always been the bread and pasta lover... But if this is what it takes for me to feel better then its what I must do to stay well.

Do have a question, as far as vitamins go the one I normally take has wheat in it, and mom always tells me that since I only take one a day its not a big deal since the last time I was at the grocery store all the gluten free vitamins were not as complete as the one I currently take. So is my mom wrong and its worth changing? If so any good complete brands out there?

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Yes, your mom is wrong--you canNOT take a multi-vitamin with wheat in it. Absolutely not! You should get your vitamin/mineral levels tested and take only those nutrients that you're deficient in. With a whole-foods diet, you should be able to get most of what you need from your food. If you're unable to absorb any nutrients, your tests should show you which ones you need to supplement.

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The blood test that was taken said all I needed was iron, because I don't really eat red meat, and all other levels were normal. Looks like that is going in the bag of gluten items to take to her house :)

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I dont think you quite understand how serious the condition is. It can take just a small breadcrumb to cause damage to your body This is not like a simple allergy. Autoimmunity is a whole different thing. if you continue to expose yourself to purposeful glutening as well as cross contamination from kitchen surfaces that have handled gluten, you could be looking at developing other problems. Take it from me, it is not worth it. Many of us learned that lesson the hard way, including those who were self-diagnosed.

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    • Are you vegan or vegetarian?   I am concerned about your lack of protein and fats in your diet.  These diets can work when you are also gluten free, but as a celiac you can be malnourished.  It is hard to heal when you are slowly starving yourself.   No offense, but some newly diagnosed celiacs end up with food disorders.  Perhaps working with a dietician can help.   What actually are your blood glucose levels?  Did you know that just as Hashimoto's is common with celiacs, so is type 1 diabetes?   Ask your doctor for antibodies testing for Type 1 diabetes (TD1), if your blood glucose levels are not in the normal  range.  You can develop TD1 (LADA) at anytime.   For adults there is a "honeymoon" period which can last for up to five years.  Be on the watch for other AI issues (besides TD1) too.   It is so important to monitor your health after a celiac disease diagnosis!  
    • He was not IGA deficient.  I'm still hoping we can convince the base GI to approve his referral.   Thanks for that thread about TTG Igg.  That's exactly what I was wondering. 
    • Star Anise Foods  rice paper and spring rolls are gluten free they have brown and white rice versions. I have not had issues with these in the past when I used to use them. Should be able to find them on amazon.
    • Hi strawberrymoon, If you are having a blood sugar problem, that can cause nerve damage and tingling.  Nerve damage is often associated with diabetes.  You can ask your doctor to check your A1C level to get an idea how it has been doing. It would probably help your glucose levels to stick with a paleo style diet, avoiding most carbs.  Carbs and meats have a different affect on blood glucose.  Carbs tend to spike blood glucose while meats even it out. There are a lot of negative changes that can happen with high blood glucose.  It is wise to try and get it under control ASAP.  My brother has lost most of his vision in one eye now from high blood glucose.  And he has the tingling symptoms you described.  The tingling can progress to pain in time.  My brother chose to ignore his diabetes and is paying the price for it.  He is doing better at it now but the damage is done. Yes, B-12 deficiency can cause those kind of nerve symptoms.  But if you have high blood sugar that is the more common cause.   Diabetes is not a rare condition.
    • I have been living in Ho Chi Minh City, Vietnam, for two years, and finding gluten-free food is proving more difficult than I thought, even if I am cooking my own food. Wheat flour, called "bot mi" in Vietnamese, seems to creep into a lot of stuff nowadays. What's more, manufacturers do not feel it is important to list bot mi in the ingredients on a food's packaging unless it is a principle ingredient in the food. In other words, soy sauces or wraps with just a tiny bit of wheat flour added to add a touch of thickness or pliability are not guaranteed to list the ingredient. For some genetic reason, Vietnamese people are not nearly as susceptible to food allergies as Westerners - it probably has something to do with exposure to less hygenic foodstuffs having built up an immunity over hundreds of years - so it is not really considered important to split hairs in that department over here. Anyway, I love rice paper but have often gotten glutened by it when I have it. Can any celiac who could tell if a product had gluten by more than just the ingredient list on the back let me know a definitively gluten-free rice paper brand? I know that very few rice paper brands actually list wheat flour in the ingredients, but I don't 100% trust the ingredients list for products made by Vietnamese companies. Call me paranoid. By the way, I have a neurological condition that irreversably breaks down my immune system when I ingest gluten, so I don't want to experiment with trial by fire here.
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