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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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    • I was only asking because when ferritin is low that you can experience hair loss/fatigue etc. even if your other iron levels are in range. This just happened to me so I thought I would share just in case it helps you. Ferritin should be above 50 to be optimal, not just "in range."  I've been on iron supplements and much better now. This may not be your problem at all, but I would have them check your ferritin levels. Low iron or anemia is common with celiac. The ferritin test is measuring how much iron is stored in your body. FYi: Iron binding capacity is really telling you how much protein your liver is making in order to carry that iron around. Usually, iron binding capacity will be higher in the range when iron is low. Edit: Also my blood pressure was low when my ferritin level got very low.
    • Hello I'm happy to join, any help is greatly appreciated as it can be difficult by times for sure. Unfortunately, I have been told my doctor has definitely not been doing anything correctly and very backwards about Alot of things. I live in canada, and there are celiac support groups I have found but I am about 2 hours away from any. I live in a pretty rural area. Although,  I have still received some help from them , they prefer a diagnosis before helping out to much. My doctor has me on a waiting list to see a gastrointestinal specialist but whenever I called her office to inquire about an appointment time I was told there was a very long wait and that I was considered to be a non emergency. So I am waiting to get an appointment. I have seen a dermatoligist for some of my rashes and she said it was dermatitis and gave me different creams for them.  It is frustrating because I don't know how to go about getting a actual diagnosis besides this biopsy. I was told to request a different specialist, but supposedly there is a waiting period for most in our area. 
    • Thanks for all of the replies. I've just found out I'm not getting to see a dietician because of not having a definite diagnosis which is another blow. I've had loads of bloods done but they just say they're all normal. I did have low vitamin D and high parathyroid but it's sorted itself out after a course of high dose vitamin D and they're not checking it again for a year. No chance of getting referred to endocrinology, gastro won't do it and neither will my gp. I've tried giving up coffee and all fizzy juice and it hasn't made a difference. I'm exhausted and scared and still have no clue what to do next. My gp has zero experience dealing with this type of thing - last time I was there she said it could be because I've restricted my diet too much and I should eat more gluten-free replacement products - everything I've read online says this is the worst thing to do! I'm asking for a copy of the last blood results this week so I can go through them myself but other than that I'm pretty stuck. 
    • I really am iffy on talking about this side of my gluten issues, I think I am about to ruin my reputation on this forum coming about as some extreme crazy guy saying this but I wanted to get this off my chest and perhaps see if anyone else might share a similar trauma. I get emotional recalling it, this side of my reactions, as it is most ingrained and very traumatizing experience, and I am not proud of it as the mentality I have now disgust me but I am going to come out about it. One of the scariest things in this world is when your own mind turns against you, when you can not think about what you want to think about, when you can not do what you know you should be able to do. When I got glutened really bad these where things I felt with my own mind would start looping, and thoughts would not come together. I would loose comprehension, feel like I know I should be able to think about something but my mind was not working. The same thing looped over and over and over like a broken record, This led to anger, anxiety, depression, panic, top it off with loss of feeling in my hands and feet, and the pains in the gut......it was a nightmare. I would go as far as beating my head against walls and punching them out of frustration as to why my own body and mind where not working, I just wanted it to end the pain to stop. I still have scars on my fist from punching into a nail in a stud once and kept going.....I scared everyone and myself distanced my self from loved ones. And started running a bucket list accepting that I was going to die soon. Hell to this day parts of the brain damage seem to be permanent as I can no longer do computer programing or some forms of math, they just no longer make any sense or connect. Then we learned what was causing it, and once the symptoms started to fade, I would get very angry if someone in the shared house did something stupid and got me sick again. The fear of going back to that caused violent and drastic actions to get away from what was making me sick. The sheer fear of my own mind turning on me led me to drastic actions to prevent it, throwing everything away I thought could make me sick, making sure no one else used that kitchen, used freezer paper and gloves when fixing my foods and working in there. I really destroyed and burned all bridges I had then and alienated myself from others. In the end it motivated me to learn how to cook, to get and renovate my own apartment in a building downtown, and start a business to pay for my new diet, by selling safe food to others with this issues locally at farmer markets. But it changed me on a very deep level, that traumatic experience to this day I have a issue looking at others and dealing with other humans who eat that stuff.......the stuff that breaks my mind and body so horrifically. If I have to compare it to something its like watching aliens drinking antifreeze and eating poison.....it causes a subconscious level of disgust and slight envy. I really can not even look at the stuff without recall what it does and feeling a twitch. I know I am the alien here, but it feels vise versa, and I look down on the normal people as odd creatures.  I go to the store and find myself overly avoiding contamination, keeping stuff in my own bags, asking the cashier to scan and bag it as I pass it not letting it touch that flour I see on the belt. I am hyper sensitive to the stuff I know and that fear semi dominates my mind as crazy as it sounds.  I am recovering and am forcing myself to try to mingle with other humans overlooking that one thing, but that deep rooted trauma still flares up as a protective measure especially around foods.  I could talk on and on about the other side effects but this one is the hardest to talk about it, and I feel others might be able to relate to it.    
    • Time.  You need time to heal.  Yeah, I am like a broken record!  😄 So...Lycra is your best friend for now (that and old baggy sweats!).  Hang in there!  Hugs!     
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