I've only been completely Gluten Free since October 2010 (7 weeks as of this entry). I have finally made the connection that I have gluten intolerance and that is what I've been battling all of my adult life, from age 18 to, now, 42.
As a child I had various GI problems. I would throw up a lot after eating (didn't know why), was prone to stomach aches & had my tonsils out when I was 4. The GI issues lasted up to my early 20s but seemed lesser in my teen years. I was a good student, active & athletic.
In my early 20's I was tired a lot but kept pushing and functioning. I felt sick a lot at college but, as it is, with gradual changes, I didn't notice them. I was too busy Then after having my first child, at age 24, the issues seemed to escalate. I became susceptible to every cold & flu that went around then developed chronic fatigue-like symptoms, starting to struggle with weight and the doctor I went to kept telling me I was "stressed".
In my late 20's I got really sick during a particularly stressful period. My hormones were off...the specialist thought I had uteran cancer at one point..I missed 4 months of my monthly cycle & was very sick. I found later that I had developed a systemic yeast problem - Candida. In my search for alternative cures (the medical profession wasn't helping), I found a diet called "Body Ecology" that helped me feel better than I had in years. It was gluten-free, dairy-free & sugar-free. Three months into the diet I felt about 75% of normal & used the diet to self-correct for the next 2 years if I ever relapsed. I had no idea that gluten was the problem yet. While I felt a lot better I didn't realize that if I went back to bread products, I was never going to feel 100% better.
Two years later I wanted to lose 20 lbs so I find the Atkins diet. After 2 weeks of detox (I felt terrible during this time) I then felt like a million bucks. For the next 13 years I controlled any health issues that were really debilitating by using the Induction version of the diet (gluten, dairy & sugar-free) to feel better.
When I finally was pregnant with our 2nd child (took 8 years and lots of infertility problems along the way) I started eating gluten and miscarried at 3 months. Needless to say I was devastated. I went back on Atkins and had a successful pregnancy (now our DD is 9.5) but had high BP and was developing toxemia toward the end and was on bed rest.
In August of 2008, my mom had a severe stroke & the stress of being with her through 3 hospital stays & being the only person who could handle her affairs took it's toll. Within 6 months my body began breaking down so badly from not eating properly that I could no longer tolerate a low carb diet like Atkins. My body revolted. So for a total of 2 years I was glutening at a level I hadn't in 15 years. Within a year of mom's stroke I was so sick I almost couldn't function. I had trouble walking up stairs - it hurt so badly. My legs were swelling. My joints hurt everywhere. Blood pressure was high. Was gaining weight inexplicably. I had back pain and had trouble sleeping. No amount of "healthy eating" was working. Whole organic foods, with whole wheat, was making me sicker. This goes on for another year, during which time I'm looking up symptoms...I'm showing signs of vitamin deficiency. Start taking vitamins but it's as though I'm not absorbing them. I develop heat intolerance this last summer and feel like I'm dying in direct sunlight over 80 degrees. This is a symptom of M.S. I'm so tired. The heart palpitations start. The tingling in the legs & hands. It's like I have bad circulation and arthritis. I'm thinking - how OLD am I??
So we go on vacation in late September this year and I see a friend whom I haven't seen since '07. She has Celiac. I am talking about the fact I think I have an iron deficiency. She said she's very iron deficient. The wheels start to turn. I come home and take iron. Hey, I feel a little better. She takes sublingual B. So I take a sublingual B-complex. Feel even better. Still suffering but better. Then it hits me...Body Ecology and Atkins are gluten-free diets. I go online and read everything I can about gluten intolerance and suddenly - like dominoes are falling -my entire medical history and the last 20 years of my life make sense. I had no idea that gluten intolerance could present as 100 different conditions and is an auto-immune disorder. I was starting to think I had Fibromyalgia among other maladies.
I immediately went on a gluten free diet and I felt that same detox I did with Atkins...hmmmm...interesting. Within a week I'm feeling a LOT better! Hooray. One week in, I eat a completely gluten-free ice cream bar and have intestinal pain within 2 hours and feelings of a raw & sore insides for the next 2 days. Guess I'm dairy intolerant, at least for the present. Then I notice soy is not being tolerated. Bye bye Soy. A month into the diet I'm convinced corn is a culprit too. Bye corn. I love you corn but bye.
So here I am, about 7 weeks into the diet and I'm feeling a TON better. I'm not 100% there yet as I still have occasional relapses of previous symptoms. I am trying to root out all cross-contamination and find the products I feel best on.
It's going to be journey but after 20 years of suffering off an on, and two particularly severe lapses of bad health 15 years apart, I am thankful and grateful to finally find the answer to the two decade mystery I called my life. I lost so much to being unwell. Here's to making the next 20 better!
Update 1/29/11: Milestone of 3.5 months on the diet. I can eat corn again. This just happened in the last two weeks. I can eat dairy products again too. Am I doing the happy dance or what? Soy, however, is my new enemy. I accidentally ate some salad dressing I made with mayo (1st ingredient soybean oil) and within 2 hours my right hand was so painful (joints) I couldn't close it past a claw-like formation. It's getting better but it's been a week and it's still only 50% better. Before this I'd had 2 weeks without hand pain - only occasional stiffness. The exciting thing is - I'm healing. Just before the 3 month mark I started to feel better about every 3-4 days. I'm still improving weekly. Hang in there everybody. I was in BAD shape in October and I'm about 65% better most days and some days I feel 85% better. It's not always just about the glutens. Secondary allergies are a problem too. I think I've always been allergic to soy and didn't know it.
Update 4/11/11: 6 months into the diet and life is looking up - way up! About 3 weeks ago I finally healed up enough to be able to tolerate a Paleo-type diet. My diet is primarily proteins, veggies, fruits and the occasional potato. I am dropping weight steadily again and my energy & clear-headedness is back. I felt much better on a gluten-free diet, alone, but I can feel the life returning to my body by returning to a lower carb, whole foods diet. I can't believe it's been 6 months already since this journey began. All the adjustments have been worth it to feel human again. The emotional detox & rollercoaster was gone by the beginning of month 4.
Update 6/14/11: 8 months in...what a difference. My stamina is coming back! I've been strictly gluten-free all 8 months and off soy since the above post. My health is good. I'm almost never sick now. I still have days now and then of feeling like I'm tired & my bones ache, but that's because of hormones I think as much as anything. My digestion is MUCH better and if I make an effort, I can lose some weight now. I just have to watch the carbs. 8 months ago I wondered if I'd ever feel this good again. I have days now of almost 90% and never slip below 75% any days except hormonal ones. I can literally feel the life seeping back into me week by week. If anyone out there is struggling & wondering if it'll ever get better. It will. It just takes time. Toodles.
Update 11/5/11: Over a year being gluten-free. Time flew! In the past year my health has really improved. I went back to work full-time in August (amazing that my health allowed it!) and have found that supplementation is the name of the game now. Being more active & having more stress, my body eats b-vitamins and others like candy. I had a slight relapse of muscle & joint pain over the past month and determined it was vitamin deficiency resurfacing. I am now supplementing with B complex, iron, cal/mag/zn, omega 3,6,9 and C and waiting to return to the high point of this past summer. Hoping to get back to my new "normal" very soon!
Ditto what Skylark said. I've been gluten free now for over a year and while it's a challenge to have 3 of us that are gluten-free (me and our two kids) and my husband not gluten-free, it can be done. I also suggest that you do not keep regular flour in your kitchen. It does get everywhere. When my husband wants baked goods, we buy them. I only bake gluten-free in our kitchen.
Your own pot or two and a toaster is necessary. We have our own butter dishes too. One gluten-free, one not. "Globbing" the jelly, mayo, etc. which was suggested is what works for us. No dipping.
Potlucks aren't as bad as you might think. This way of eating just requires some planning. I bring a tasty gluten-free dish to potlucks and if I don't think I can get other sides like fruits or a salad, I bring my own. I also bring my own bread just about everywhere.
Just give yourself a break and realize there is an adjustment period, emotionally, when you go gluten-free. As my body was coming down off the gluten, I even had some psychological affects (very temporarily) where I would break out into crying jags because shopping was so stressful or my husband went through all the trouble of scraping the grill, using separate utensils etc only to put our meats in the same plate with juices mixing (so his gluteny sauce was now all over the bottom of my steak. Seems like a million years ago now. But I had a few meltdowns in the early weeks of gluten-free.
I just want to encourage you that it DOES definitely get better. Once you have the shopping down, once you ferret out all the places you can eat out and what you can eat, once you get your groove going with potlucks and friends have adjusted to your health issues...it starts to feel less oppressive.
Even if you are a cook-from-scratch type like I was, I highly recommend you locate foods that are pre-baked, pre-cooked, etc in your area and gluten free. You'll get caught off-guard, busy, or sick and it's a great comfort to say, "Grab that soup mix out of the pantry - all I have to do is add water and it'll be ready in 15 minutes." Shelf stable rolls you can throw in the oven, along with as salad, and you've got a meal. (BTW I just did this yesterday. Our daughter was down with the flu and I'm half-sick myself).
Sounds like as RoseTapper said, you need to grab an article from Dr. Fasano and show your family...you have Celiac. The end.
I think people look at the gluten-free diet and see how restrictive it is and how hard it is going to be on you and everyone around you, that they think they are doing you a favor...maybe you CAN eat it - try!! Try!! lol
I'm 43 and have met a lot of resistance throughout my life from people and my choices (good ones by the way). What I see now, that I didn't see 20 years ago, is that if you make decisions and are very sure about what you are doing and NICELY don't give people room to insert themselves into your decisions, they eventually quit trying. When I've had the most troubles with family & friends is during that "figuring something out" period where you are unsure or don't sound convicted or are still looking for answers to something. Then they come flying out of the wood work. There is nothing people love more than telling someone else what to do LOL
Hang in there. Stick to your guns and just realize...it's your decision and make it. They don't have to suffer the effects of what you do or don't put into your mouth - you do. People who love you really don't want to make you sick.
I'm just SUPER careful when I eat out. I ask a lot of questions in my nicest voice, smile a lot, thank people for being patient with me, etc. If I see anything that doesn't look quite right, I ask more questions. So far I have not been glutened that I am aware of and I've eaten now in about 10 restaurants since going gluten-free. I avoid like the plague any place that does not advertise gluten-free foods because it means they have zero understanding of the problem. My thought is that while mistakes can happen anywhere, the odds are lower when they understand cross-contamination etc.
I hope you are feeling better. I sure feel for you.
At first oats bothered me, even Bob's Red Mill. About 6 months into being gluten-free, I was able to add them back on. I mostly use them to make treats (Cookies). I make the no-bake type with the peanut butter, added nuts, coconut, etc. Quite good. Kids love them and it slows the absorption of all the sugars because of the proteins & oats.
I'm feeding myself and 2 kids gluten free and they eat like Kings, seriously. There are so many gluten-free subs that are out there. You just have to know what to buy.
Udi's bread is great. I make grilled cheese sandwiches with them and serve Pacific Foods Tomato Soup with them (I buy the soup at Winco in our are a- discount store).
The kids love Annies gluten-free Mac n Cheese. I get them from an online store on Auto-Ship.
They get chocolate cake (pamelas) and ice cream.
Tinkyada's pasta is wonderful. If you make Lasagna without cooking the noodles first it comes out nice and firm.
That's just the subs for regular gluteny foods.
As other posters mentioned, there are lots of gluten-free foods. But if you are missing the normal stuff, this can help.
One thing I did to make life easier, is to buy Jules' Gluten Free flour, which can be used JUST LIKE regular flour in most recipes. I make brownies, pineapple carrot cake, you name it. She also has e-book recipes.
Celiac is just like anything else...it has to be learned about and managed. Life is not over because gluten is out. There are many restaurants that will accomodate gluten-free diets too.
If I had to make a guess...the reason you are discouraged is that you have not educated yourself to the degree you need to and found the substitutes you need, diet wise, to feel normal. If you don't eat, you are going to feel wacky. Not having support from others is difficult, but not having support for yourself is worse. You aren't spending the time to learn how to feed yourself sweetie. Do yourself a favor and invest the time. We've all been down the same road. Hon, I feed 4 people gluten-free DAILY and have been doing it for the past 8 months on a budget. It can be done. I promise.
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Seems like a million years ago now. But I had a few meltdowns in the early weeks of gluten-free.
