Suddenly It Makes Sense

[LCEllis]

I have been hesitant to write or participate here because I don't "officially" have a diagnosis. My enlightenment started with my sister getting an eventual diagnosis of wheat allergy, her doctor felt her villi damage was not sufficient to say actual celiacs. My mom told me about it, but I just didn't feel the energy or need to take it too seriously for about a month. But my constant exhaustion finally made me decide to try the diet & see what happens, especially after finding out that we share another food allergy, eggs. Since I don't have health insurance, and the only treatment is diet anyway, personally I didn't care about what a doctor did or didn't decide. I JUST WANTED TO FEEL BETTER!

I decided to try the diet for a week or two and see what happened. I started feeling better at about 4 days and started having a little bit of energy at about 6 days! Then at about 1 1/2 weeks I was invited to eat out at a restaurant I was pretty sure I wouldn't be able to stay gluten free at. Since it was voluntary anyway, I decided to go. I ordered a salad, the waitress checked the dressing (as much as I knew to tell her anyway) and ended up in the bathroom before we left the restaurant and again when I got home. I was also VERY bloated (the first time I was aware, I think because it had been my previous norm). I realized this is NOT voluntary anymore. This is a life necessity.

I was diagnosed for the first time in first grade with iron deficient anemia, was tested many times in High School for mono. because I was always so extremely tired, have had periodontis disease since I was a teen, depression ranging from mild to severe from my teens on, and so many of the other common symptoms. NEVER once did any doctor I saw ever put it together, even when I was tested for allergies in my 20s.

I am so new to this there are days I am angry that it was never caught by the "trained professionals" and days I am embarassed and just don't want to have to say "I can't eat there" or "I have to check if they have food I can eat". However, on the up side I have found lots of food in the grocery and lots of restaurants that are WONDERFUL about helping me to be sure my food won't make me sick!

I have been trying to stay gluten free for almost 2 months now. Most of my contamination has been unintentionally self-inflicted like when I made a pizza on my pizza stone from before I went gluten free. I found out how painful a contamination can be. I was in pain for 6 days and brain fog for even longer. I truelly look forward to continued improvement in my health, energy, memory, etc. I am grateful I found an answer and am finally able to do something to start feeling "normal" someday. I am also thankful that I live when I do where it is possible to eat out, buy food, and live a close to normal life without have to eat meat, vegetables and fruit as the only safe foods I can find. I look forward to finding a bread that can be eaten without toasting and still taste decent. Someday soon I hope

[mushroom]

Hi, and welcome to the forum.

You will find, if you have done much reading here, that your story is not unfamiliar. It is sad, but true, that we often have to diagnose ourselves and devise our own treatment, research what other problems we may have, ask our doctors to perform certain tests, tell them what they need to do for us. If we don't do it, it probably won't happen. The good news is that there are now so many resources available to us. Without the internet many of us would remain undiagnosed. And as we have diagnosed ourselves and demanded gluten free foods, those foods have miraculously become available to fill the growing need. We all knew that what we had was not that elusive IBS or fibromyalgia, that there was something else going on that no one could tell us about. And we all JUST WANTED TO FEEL BETTER.

But now that we know what it is, we can't afford to be embarrassed or bashful about what we need. We have the right not to eat things that make us sick and we should never eat something to make someone else feel better. If you don't have a gluten free bakery in your vicinity you will probably find that the most edible, tasty breads are those that you bake yourself. Sad, but again true. Breads that have been frozen, especially gluten free, cannot match fresh bread. Also, it is hard to get a good crusty gluten free bread. If you are not soy intolerant, I understand that soy flour can help with crustiness. You might start off trying some of the bread mixes and see what tastes good to you. It can be expensive at first to buy the separate flours and then find you don't like them. Many folks are perfectly happy with Pamela's or Better Batter mixes/flour blends. Flour blends can also be ordered on the net through Amazon and other sources. The more surfing you do the more you will find.

We do have to be eternally vigilant about what we put in our mouths, but it is a small price to pay for getting rid of the pain and anguish and feeling human again.

I wish you luck in your recovery and if your have any questions about anything, the folks here are extremely helpful and knowledgeable.

[tiredofbeingsickandtired]

My endoscopy would'lve been MONTHS down the road when my bloodwork came back showing possible celiac. I remember my dr looking at me and telling me I could not wait until August, I was so weak and sick, that she wanted me ot stop gluten and possibly dairy that day. I barely drove myself to the dr. I'd been in the ER with low potassium 3 times in the prior 3 months. It was a fluke that the rash I had was what confirmed Celiac. I still have people tell me that the only true diagnosis is endoscopy (which my dr begs to differ considering my DH rash confirmation). I tell them that I have a whole list of the changes in my life to prove it, I don't need an endo to make me feel worthy enough to eat "special".

Because I have a whole variety of unsupportive people I plan like a girl scout everywhere I go. I try to blend in with who I'm eating with. My goal is to make delicious food to carry with me that makes others want to eat with me... while shoving their gluten filled plates aside.

I am so glad for you that you took control and found out what was wrong. I waited for MONTHS after my first dr told me there was no way it was celiac, only to find out she never ran the test in the first place..she dismissed it because I was overweight. If you get a "its all in your head" well tell them no, it was in every part of your body...thats healing now because you took control of your health.

My real problem right now are my kids and people's reaction to them going gluten free without a "diagnosis". One was borderline on the bloodwork, the other two came back normal, the dr said "YAY they don't have celiac" walked out and still ignored all the symptoms they were having to cause her to test for it. (insurance mandates THAT dr, so I am up a creek) I told the kids it was their choice since they are old enough to make the connection to what they eat and how it affects their body.(by the way that drs. visit was 3 minutes and 25 seconds long)

Each of them decided to try eating with me...well the pizza was so much better than dominos... and the desserts and snacks wow... they were hooked. They also saw the mom that lived in the bathroom & crawled up the stairs crying at the end of the day shed 36 pounds (57 total) and start back running and loving life with them.

After about 7 days of serious withdrawals- Gone are their tummy problems, tiredness, malaise (I just thought I had lazy moody kids), "growing pains" are gone too...they have blossomed into 3 pretty happy kids. My oldest ate a slice of pizza at a youth party last week and was sick all night. She said how bad she felt was not worth it to eat the same thing as her friends.

So next time I will send a huge pizza and I bet there won't be a piece left.

again I am so happy for you, I look back on years of being sick, feeling like I was so overwhelmed by everything and I'm sad that it took several trips to the er to take a stand for my health.

[Wolicki]

I am so glad you are feeling better! Rather than write a long post about my story, I will just say I can echo everything written above. Good for you for taking your health into your hands!

BTW, Udi's gluten-free bread is great and doens't need to be toasted

[nu-to-no-glu]

I second the notion on Udi's bread! I've recently discovered it myself and you don't have to toast the crap out of it! You don't have to toast it at all! So good.

Also, ditto on your experiences, you are not alone. Definitely keep reading these forums, you'll find the support and knowledge you need to keep you motivated without an actual diagnosis. This place and the people have helped me tremendously, bc sadly, we live where so many drs are uneducated on this disease. Glad you are feeling good

[angieInCA]

My endoscopy would'lve been MONTHS down the road when my bloodwork came back showing possible celiac. I remember my dr looking at me and telling me I could not wait until August, I was so weak and sick, that she wanted me ot stop gluten and possibly dairy that day. I barely drove myself to the dr. I'd been in the ER with low potassium 3 times in the prior 3 months. It was a fluke that the rash I had was what confirmed Celiac. I still have people tell me that the only true diagnosis is endoscopy (which my dr begs to differ considering my DH rash confirmation). I tell them that I have a whole list of the changes in my life to prove it, I don't need an endo to make me feel worthy enough to eat "special".

A positive DH diagnosis is a Positive Celiac Diagnosis...period....

My blood tests came back very weak positive after being gluten-free for 6 weeks and my GI said it was possible I was just intollerent and we scheduled a endoscopy for a month later in which he wanted me to start eating large amounts of gluten for the test. The very next week I saw the dermatologist and got a DH diagnosis. Called the Gi and he said, "Well there you have it. You have celiac disease. No need for the endoscopy, we will cancel the test." "Now just follow the diet, it's a lifelong commitment".