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NikkiM

Self Diagnosis?

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Has anyone just done a self diagnosis? My gastroenterologist insists that I have IBS, but I know it is something more. I have:

chronic diarrhea, every day, for almost 4 years now

exhausted all of the time

have anxiety

am 15 pounds underweight

never have an energy

depressed

cold all the time

osteoporosis (I am only 31)

It is difficult to leave the house sometimes because the diarrhea is so bad. I want to start my family and start living again, and am thinking that I might just go on the diet myself and see if it helps. I am just tired of fighting with the doctors. I know it would be best to get an official diagnosis, but I am really at the end of my rope. Has anyone else self diagnosed?

Thanks!

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Guest Chrisbee

My daughter, two sons and I have been to multiple specialists and no one ever considered celiac. They'd either tell us to take ibuprofen, celebrex or ultram for the pain, tell us to take more iron for the anemia, or hand us a prescription for antidepressants or even ADHD medications to help us with the brain fog. Oh, and a basketful of creams for our rashes and blisters. And we've spent an absolute fortune at the dentist and I've been lectured over and over how I don't make the children brush well enough. We brush and floss three times a day, use prescription toothpaste and rinse, take flouride tablets and still our teeth crumble. My daughter was recently checked for an iron intolerance (negative) which got me to thinking that maybe it was something we were consuming that was causing the problems. I started researching genetic food intolerances and found information about celiac disease. I took my 6 yo to our family doctor and he told us it was hard to diagnose and he didn't want to try so he would send us to a specialist. He told us to go gluten-free in the meantime to see if it helped. He used to be up several times a week crying with his bones hurting and since going gluten-free, he hasn't been up once.

I have been told since going gluten-free, that it wasn't a good idea to do so before being diagnosed. We feel so much better though, I just don't want to go back to eating gluten. One of my daughters is still eating gluten and she did have a celiac panel drawn on Saturday morning, so we are anxious to see what it shows. My eldest son doesn't believe he has it, even though he has all the symptoms, so he doesn't want to be tested. The three youngest children and myself have been gluten-free for about 5 weeks and can really tell a difference. My 6 yo doesn't get in to see the specialist until June 20th, so I still have time to put him back on gluten if I need to, but I don't want to. He's felt good for the first time in his life and I hate to make him feel bad again, even if we don't get a diagnosis.

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Yes, many here including myself have simply tried the gluten-free diet, found that it works, and stuck with it. Truly, the diet is the best diagnostic tool to determine if it will help you. Many times, even when "official" tests give negative results, the diet helps immensely.

Also, a syndrome is a condition for which the cause is unknown, so IBS is what doctors call it when they don't know. If your doctor is trying to tell you not to do something as simple as trying a diet, then I'd suggest getting a new doctor. It is very common for doctors to be quite clueless about Celiac. Your symptoms are very familiar to many members of this board.

In short, try the diet and see how you feel. Most find it a challenge at first, but once you get the hang of it, you'll probably wish you started a long time ago. It really does get much easier after a short while, so do keep that in mind, and try not to get discouraged.

I hope you get the answers you need to start feeling better.

Welcome to the board!

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Have they given you the blood test? If not, I would insist on it, then go gluten-free immediately afterwards to see what your dietary response is. It's a simple blood test, I can't see why a doctor would refuse to do it.

Your symptoms certainly could be from celiac, and you could get much better on the gluten-free diet. It's certainly worth a try. All my celiac tests were negative, but I did have improvement on the gluten-free diet.

Have you had your thyroid checked? That could be the cause of the coldness and the fatigue.

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Has anyone just done a self diagnosis? My gastroenterologist insists that I have IBS, but I know it is something more. I have:

chronic diarrhea, every day, for almost 4 years now

exhausted all of the time

have anxiety

am 15 pounds underweight

never have an energy

depressed

cold all the time

osteoporosis (I am only 31)

It is difficult to leave the house sometimes because the diarrhea is so bad. I want to start my family and start living again, and am thinking that I might just go on the diet myself and see if it helps. I am just tired of fighting with the doctors. I know it would be best to get an official diagnosis, but I am really at the end of my rope. Has anyone else self diagnosed?

Thanks!

Yes! I am still not certain if my hunch is right, but outlook is good. I would recommend getting off the gluten and see what happens. I first learned about Celiac when I was doing a search for my daughters abnormal stool symptoms. She is 2 and had what looked like sand in her stool. I came upon this forum where another parent had the same experience. My daughter does not have any of the other typical symptoms, although she has a very small stature. At the same time she was having this "pooping problem" I was experiencing increasingly intense mood swings, and would sometimes cry all day for no particular reason. I did not have any gastrointestinal symptoms, but I also was always tired and had a hard time waking up in the morning-(I was always a morning person). My lips had gotten to the point where they would crack and bleed-I tried everything with no avail. I decided to get her tested...do not have results back yet but took us both off Gluten. It's been three weeks now and no sandy poop for her. I feel more energetic and clear-headed. Most exciting, my lips are healed! I accidentally made a pot roast with a seasoning that had gluten about a week ago. An hour after eating, I got a severe headache, red and very swollen around the eyes, and gas. Daughter had diarrhea the next morning. Heard the blood tests are not very accurate so I will be interested to see how results come back. To me, the proof is in the pudding and we will stay off gluten as long as it makes us feel better.

If you do get off the gluten, be sure to do a lot of research first, there is gluten in the strangest places! Good luck!

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We self-diagnosed my husband's gluten intolerance after getting nowhere with the doctors. He suffered through a couple years of spending about five hours a day in the bathroom. He went to several specialists and had countless tests. Celiac was brought up, but he tested negative every time. He has a grandma with Celiac disease, so we thought that this could still be a possibility as it took her twleve years to be diagnosed after finally getting a positive test. It took less than two days without gluten for him to feel better. His doctor said that the test for this disease is not very accurate and just because you test negative, does not mean that you do not have it. Those first couple meals (lunch and dinner) were baked chicken breast, rice and canned carrots- no spices besides salt and pepper. When he has a flare up we go right back to that bland meal for few days and it helps his tummy to catch up. He has also been diagnosed with Crohn's, so he is still struggling, but cutting out the gluten has really helped. Go ahead and try to go gluten-free for awhile, you have nothing to lose and you may find out what is bothering you. Just make sure that you are totally gluten-free for accurate results, a couple crumbs can contaminate your whole meal! Good luck.

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I have self diagnosed many thing that were then verified by dtrs. I went gluten free 2 weeks ago and plan to stick with it- no matter what tests may say. Decided I do not want to go back to gluten just for blood work that may or may not show anything just to then have an endoscope biopsy that it too may or may not show anything. Instead I sent off my "sample" to Enterolab today for their Celiac panel test. From the research I have done this seems best way for me to go. Good luck.

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Has anyone just done a self diagnosis? My gastroenterologist insists that I have IBS, but I know it is something more. I have:

chronic diarrhea, every day, for almost 4 years now

exhausted all of the time

have anxiety

am 15 pounds underweight

never have an energy

depressed

cold all the time

osteoporosis (I am only 31)

It is difficult to leave the house sometimes because the diarrhea is so bad. I want to start my family and start living again, and am thinking that I might just go on the diet myself and see if it helps. I am just tired of fighting with the doctors. I know it would be best to get an official diagnosis, but I am really at the end of my rope. Has anyone else self diagnosed?

Thanks!

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I had a negative blood test, but still decided to try the gluten free diet. It got rid of many of my symptoms. It can't hurt to try it. good luck

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Yes , I could not believe the quick cure. I feel so good again. I have been gluten free for only 5 weeks. I am happy and energetic again. I was convinced that I had cancer or some serious disease for so long. The doctors put me through so many expensive tests for everything but celiac. I can not believe that most doctors do not test for it. I have been spending a fortune at the gluten free mall and the local health food stores. I am a vegetarian so I was consuming gluten in almost everything I ate. I saw wheat on the label and thought "healthy". I have had to change everything I thought I knew about nutrition. It is so worth it. I will never go back to gluten. I think some doctors do not like to even tell patients about it because there is no pill they can sell you to cure it and you feel so good you will not be in for all those office visits . I feel bad thinking this way but so many doctors misdiagnosed me for so many years, or worse, said that it must all be in my head so try these drugs. Maybe the doctors are not educated enough about the poison that gluten is to us. It is not easy to transition but you must try it. I am new to this and I guess I will need to get new cosmetics and everything. Good luck !

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