Is It In My Head?

[Braewyn]

I found this site out of sheer desepration and hope that someone can help.

I have been having problems for over 15 years...since the birth of my last child. Numbness, tingling, burning bone pain, constant stomach pains and then recently, as in the last two years, serious bowel problems and weight loss. I have seen several doctors and have been diagnosed with Irritable Bowel and Fibromyalgia with occassional migranes. The common thread with each doctor is to put me on anit-depressants which add more side effects and do nothing for my symptoms. They have told me that I have leaky gut, over sensitive stomach...etc... and I have followed their advice up until recently when I reached my low health wise and frustration wise. My mother mentioned Celiacs and so out of desperation asked my doctor if that was possible and she said that I didnt have the symptoms. I believed her and went on with the way I was feeling...I am very active...I run, ride horses, back pack with my family and am not a whiner...I just want to feel better, take control of my health, get to the bottom of this all and most importantly find someone who truly wants to help and not just tell me Im depressed. I started a gluten free diet and within two weeks felt 75% better. The doctors still discounted it and wanted to do a colonoscopy and put me on anti depressants again. I tried to get in to Mayo Clinic but they said the info the doctor here submitted didnt prove Celiacs when all I want is to know WHAT it is then and why the gluten free diet is working...I am so sad and frustrated and feeling alone in this. My family is very supportive and I am thankful for that but is it truly in my head and why don't the doctors want to help? I am really not high maintenance and have been very patient with them but I am tired of it!!!! What should I do? Please help!!!!!!!!!!!!!

[bonnie blue]

Sounds so familiar....been there done that. You are not crazy, my advice is to find a good GI doctor in your area, I had to go to many doctors before they diagnosed me. Let's see they told me stress, depression, eating disorder, because of the weight loss. Don't give up help is out there, and this forum is a wonderful place, with caring people who know exactly what you are going through and are willing to help you. Sending you a big hug, and just know you are not alone,

[applegirl03]

Dont give up! That is exactly what happened to me after the birth of my Daughter in July 2008. I was not recovering well, feeling sick and dizzy all the time. I couldnt concentrate and my health declined quickly. They told me IBS, Fibromylagia, Post partum depression, but my body just got worse the more I took the drugs they were prescribing me. Finally I saw a holistic nurse practitioner who did fool allergy and sensitivity testing. She found out I was not only gluten intolerant but I had the antibodies that show up when you have celiac disease. I was also allergic to like 100+ other things that are common in foods. So I did the elimination and stuck to it and I am feeling much better now. You need a new doctor, one that will listen to you. What does it hurt to do a simple blood test? If you are having IBS and all this other stuff anyway then I would consider a scope as well and see if they can take a biopsy of your small intestine. When it comes down to it you have to be your own advocate about your health. Your the one suffering here, not your Doctor. They are providing you a service, and if they are not then fire them and move on to someone else. If you cant find anyone, show up in the Emergency room of the Mayo Clinic and then they have to let you see the docs and run those tests. A very good friend of mine was desperate after going to the doctor for over 2 years and they couldnt find anything. Told her she was crazy, etc. So she flew to the Mayo Clinic in Minnesota (we live near Chicago) and showed up in the Emergency room and they had to treat her and get her into the doctors there. Its how she found out she had a serious stomach condition and a pretty severe autoimmune disorder. So dont give up and something is wrong, your body is telling you that. Just remember you are going to have to "gluten" yourself on purpose before a blood test so that if you have celiac it will show up. Good luck!

[FooGirlsMom]

There is so much misinformation, even in the medical community, about gluten intolerance. When I saw the statistic that even after the onset of severe symptoms it takes people an average of 4 years to get diagnosed I felt sick. So for all the people who have great doctors and find out right away, that makes 8 years for someone else. There are millions of us undiagnosed out there. And there is a growing number of people like myself who had to figure it out alone. I know there are a number here on this board.

We'll all pretty much tell you the same thing...the proof's in the pudding...so to speak. If you go on a gluten-free diet and your symptoms improve or go away...you have your answer. Who cares what a doctor says? They are there to help you. If they aren't helping, help yourself. If you sincerely believe it's Celiac, then use the medical community to support your efforts. Go for the vitamin deficiency testing, etc. You may need iron, vitamin B, etc. to support your recovery efforts. Seeing a knowledgeable nutritionist who works with Celiac patients can help you gain your weight back and maintain a healthy weight.

Your story sounds so familiar. Even depression & psychiatric symptoms can be caused by gluten intolerance. I remember in high school reading about patients in mental hospitals that were hypoglycemic/diabetic back in the "olden days." We don't fully understand the mind/body connection even in our modern world. It's easier to throw at pill at something than it usually is to find the root cause. It's easy to feel depressed when you feel terrible.

I think you would feel rather comforted and at home if you started reading the threads that go back 3-6 months here on the board. I think you'll see you're in a similar boat.

Hang in there,

FooGirlsMom

[Kay DH]

It is a common thread on this forum. Doctors have a generally very-low level of knowledge about celiac and gluten sensitivity. The GI I went to said I only have a 10% chance of celiac because of my (multiple) symptoms when I eat gluten and genetics (HLA-DQ8 gene). He decided I have diverticulitis instead (negative) and only did 1 endoscopy biopsy (negative, I'd been gluten-free for 6 months with 1-week gluten challenge). Had I known what I know now, I would never have used him, largely because of his attitude. So, I have no diagnosis, beyond getting very sick when I eat gluten.

The colonoscopy is good to determine if you have other problems, but the endoscopy is for celiac. If you go to a GI, make sure it is one that has experience with celiac and you feel comfortable with him/her. If you have the biopsy (or celiac panel blood test) you will need to be on gluten (3 weeks to months, depending on who you ask), and there will need to be multiple biopsies. There are many symptoms associated with celiac, and not everyone has symptoms or the "classic" ones, especially if it hits later in life. With me it was the flu last year, and pregnancy can also trigger the immune response. Delve into the research. It is important to be armed with knowledge before you go to the doctor, and when you go shopping (gluten lurks in many foods and places, like dark corners of cutting boards).

A year ago I was afraid I would have to quit work and my hobbies because of the arthritis that hit my hands a couple of weeks after the flu. The arthritis was mostly gone 1.5 months after gluten-free, and my biking is stronger than before this started. There is a rainbow at the end of this, and it is gluten free.

[mushroom]

I have been having problems for over 15 years...since the birth of my last child. Numbness, tingling, burning bone pain, constant stomach pains and then recently, as in the last two years, serious bowel problems and weight loss. I have seen several doctors and have been diagnosed with Irritable Bowel and Fibromyalgia with occassional migranes.

If you were to go through all the introductory posts here, you would be totally amazed how many of them contain various versions of this statement. The tingling, numbness and migraines are the neurological symptoms of celiac/gluten intolerance, the bowel problems and weight loss gastrointestinal manifestations, the pregnancy and childbirth often the trigger. These are the new classic symtpoms - unfortunately not the ones the doctors have been taught in medical school, although the weight loss is one they should know about. Unfortunately, the (mis)diagnoses of Irritable Bowel and Fibromyalgia are equally common, as is the treatment of antidepressants. It is so discouraging to see this same story repeated month after year - when will they ever learn??

I agree you need to find yourself a doctor who actually knows something about celiac disease, and don't rely on a referral from those ignorant docs who say you can't possibly have it. Make a brand new appointment with someone different and start afresh or your consultation will be poisoned by the previous (mis)diagnoses. You need to have a celiac blood panel run, and you need to be eating gluten continuously for it to be positive, I am sorry to say. So if you want a diagnosis you should resume eating gluten. The antibodies in the blood stream start to fade quite quickly in the absence of gluten, and your small intestine will start to heal so that even the endoscopy may come up falsely negative. (There is a 20% rate of false negatives with the testing anyway - or you are gluten intolerant rather than fitting the celiac definition.)

[laura4669]

I agree with all of the previous posts, and I'm not sure I can add anything to what they already said. I too, have "been there, done that". I was given anti-depressants and Valium. Nice. Let's just mask all of the symptoms, and not look for the CAUSE of the problems. Seems to be that all doctors can do anymore is prescribe a drug.

Like a previous poster, I finally found a holistic nurse practitioner who spent hours with me and ran all kinds of tests to find out what was wrong with me. She was fantastic. I have also worked with a chiropractor/nutrition expert who has been wonderful.

Hang in there, your determination will pay off eventually. I hope you are able to find a health practitioner soon who will finally be able to help you.

[Cypressmyst]

I went out to Cali in my search for a competent doctor. I found a 3. Boy what a world of difference they are already making for me and my husband.

If you don't mind traveling (Their cost is very low compared to other doctors) you may want to check them out.

Open Original Shared Link

They also have a blog that is very informative of the latest research.

Yes, I am a Health Now Fangirl.

[Braewyn]

Thank you so much for replying...your kindness and encouragement has renewed my fight. It means more than you all can know.