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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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    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
    • Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year.  You've been given great information. Just breathe and then again, breathe. You're going to be fine. 
    • It is the only thing you have eaten, so it can't be anything else?  I eat it with no issues so I am not sure how you can be certain that is the problem.  All I am saying is that its sort of "your word against mine and the company's word".  
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