New To The Gluten-Free Lifestyle

[goblue2014]

Hey all,

I'm 20, and I've been chronically ill for about 3 years now. It began with intermittent blood in my stools, and extreme fatigue. I contracted mycoplasma meningoencephalitis in April 2009, and since then, my symptoms have exploded. I have chronic migraines, constipation, diarrhea, gas, bloating, extremely irregular/nonexistant menstrual cycles, hair growth in weird places, hair loss, anxiety, depression, PTSD (from the meningoencephalitis), insomnia, inability to concentrate, joint pain, nausea, tinnitis, hyperacusis, and nosebleeds (but I'm probably forgetting some). I've also always had other issues since I was a little kid - tooth enamel deformities, skin rashes on my upper arms and back, unexplained weight gain and inability to lose weight.

I'm a college student, and at the end of this semester, I was ready to take a year or so off from school because my psychological problems and other health issues were so severe. My mom talked to my aunt, whose daughter has a confirmed case of celiac disease, and after comparing similarities with her condition, I decided to try going gluten free. I know that I shouldn't cut gluten out of my diet yet if I'd like to eventually get tested for celiac/gluten allergy/intolerance, but I feel that this was somewhat of an emergency situation. I was losing my ability to even function, and since I'm in a legal battle with my current doctor (long story), I don't really have anyone who knows my entire situation and health history well. I needed to start getting better fast or else I was looking at taking a semester or even a year off of school - and since I'm very passionate about my studies, that would have been a devastating decision for me to make. I've spent my entire inter-semester break reading about celiac and gluten intolerance, and it seems like I am a textbook gluten intolerance/possible celiac case. I also have an aunt who has celiac, and I know it runs in families, so I wouldn't be surprised if I had some sort of inability to process gluten.

I have been tested for just about every disease under the sun, all to no avail, and the thyroid blood work that I just had done about 3 weeks ago came back completely normal. As far as my medical records are concerned, the only condition I have is a very mild case of colitis, but I know that the majority of my symptoms cannot be explained by just that. I have made a full recovery from my meningoencephalitis (a very rare occurrence since most people don't survive the disease), and while some of my symptoms may be explained by any damage that has been done, in the past two weeks of my new gluten-free lifestyle, even those symptoms have subsided a lot.

My biggest questions right now, I guess, are these: Is it unreasonable for me, given the circumstances, to remain on the gluten-free diet I've started? Especially since I would like to be formally tested once I have a decent, stable doctor? Also, if I want to be tested and have accurate results, do I need to re-introduce gluten to my diet at some point? Do I even need to be tested, given all of my classic symptoms?

It's only been about two weeks since I began my gluten-free diet, and I have already seen some amazing changes in my health. My hair loss stopped almost immediately, I have more and more energy every day, my diarrhea and constipation have both ceased, and my headaches have decreased in both frequency and intensity. I have a lot of hope in the gluten-free lifestyle, and I'm sort of banking on a gluten intolerance/celiac as being what is wrong with me. Any advice you can give to this newbie would be greatly appreciated!

Happy New Year!

[researchmomma]

I am new here too but I want to tell you that you came to the right place. There are some wonderful people on this board that will help you decide the best course of action for you.

Sorry you have been so sick but I have a good feeling that you will be feeling better very soon!

Welcome and Happy New Year!

[mushroom]

Welcome, goblue. After all that you have been through I agree that you deserve a little relief, and from my point of view, I say "go for it." There are those who insist that everyone must be officially diagnosed, and there is merit in that advice for a lot of people, but there is also a time to say enough with the suffering, time to get better before I die from this disease (as some of our members have come close to doing). If going gluten free, RIGHT NOW, is what is required to keep you in school.... then that is probably what you need to do --.as long as you understand the ramifications.of doing so.

Unfortunately you do need to be eating a full gluten diet when you are tested, and if you have been gluten free for much longer than a week you will need to go back on gluten for 2-3 months eating the equivalent of three to four slices of bread a day for the testing to be accurate. The other bad piece of news I have for you is that most people find that they react much more strongly to gluten once they have been off it for a while, and the challenge period can be very miserable indeed. The two weeks you have been off gluten may well be long enough for the antibodies in your blood to have receded since they are no longer needed, and for your small intestine to have started to heal (assuming celiac disease is responsible for your symptoms). Since it has only been two weeks and not six months, you might be able to get a positive test by resuming gluten for a month or so. But the caveat is that you may not test positive even at the end of two or three months either. Not everyone with symptoms of celiac diagnoses as positive; the medical profession is coming to recognize a condition which they are referring to as non-celiac gluten intolerance. Supposedly, with this condition you do not damage the small intestine and are not at risk for other auto-immune diseases associated with celiac, but can suffer the same symptoms.

So the decision to seek diagnosis is entirely yours. The treatment is the same regardless - a gluten free diet. You seem to have had all the testing that would rule out everything except celiac- you didn't mention if you have had upper or lower endoscopy but since you mention mild colitis I assume that is so - and your positive response to the diet is a pretty good indication that you are on the right path. You do not need a doctor's prescription to go gluten free, although you do need a doctor to test you for the possible nutritional deficiencies you may have acquired due to your intolerance.

So I wish you good luck on your decision-making regarding testing, and a healthier and happy New Year.

[rosetapper23]

For some people, it makes sense to get a diagnosis, but yours is one where I would side with the "don't bother to get tested" argument. Since you have relatives with celiac, have many of the symptoms associated with it, and your symptoms are abating on a gluten-free diet, there are doctors who would diagnose you based just on those factors. If you wish, in the future you could get gene testing. Based on what I've written above and a positive gene test (and perhaps without even a positive gene test), there are doctors who would be willing to accept a diagnosis of celiac. Even if what you have is gluten sensitivity, the remedy is the same....so why would you want to return to eating gluten and be tortured by horrible symptoms in order to get a diagnosis based on very unreliable tests?

Personally, I'm extremely happy for you. You seem to have found the cause of your many symptoms and are returning to good health. What else could you ask for? Enjoy your life and return to your studies knowing that you've made the best decision you'll ever make. Gluten is not your friend, and now you know.

[goblue2014]

Thank you all very much! I'm really looking forward to feeling better. I just have more and more hope in this lifestyle the longer I am engaging in it and the more I read about it and talk to people about it. If my health keeps improving at the rate that it is, I think I may stay on the gluten-free diet semi-long-term. I'd like to be formally diagnosed, but as of right now, I'm not sure that I'm willing to go back to feeling the way I've felt for 3 years now.

Of course, it's only been three weeks, and there is no way of knowing yet if my chronic symptoms will subside, but I'm willing to try it long-term undiagnosed if the risk is only that I will not have a formal diagnosis. I have had no formal diagnosis for my entire life, so I think I can wait a bit longer. The risk of re-introducing gluten for me is not worth the diagnosis. I can't afford to gamble with my health in my situation, and at this point I feel like going gluten free is my last hope.

Here goes nothing!