New With Questions Not Diagnosed Yet

[Guest AutumnE]

Hi Im Autumn Im 34 years old.

I came across your forum on a message board. I have had diarrhea everyday for 2 1/2 years usually after every meal. I was told it was ibs without any diagnostic tests. I also have many autoimmune diseases. I have pcos, insulin resistance, hypothyroidism, allergies, lactose intolerant and asthma.

I have a 2 year old dd after many miscarriages. During my pregnancy my diarrhea became really bad. I was at the point that my sciatic nerve would send shooting pains down my legs everytime I went to the bathroom. I assumed it was my ibs just getting worse since having my gall bladder taken out a little over a year ago.

I am severely obese 299lbs at 5 '11. I found information about the paleo diet and tried it. Just hoping to lose weight and be able to stay on it and to my happiness it took away my diarrhea completely. I started reading on it and I found out that I had similar symptoms to celiac disease. I hadn't heard of this before.

I feel great right now, all my symptoms are gone. My question is should I get tested? If I do from what I understand I have to go back on normal diet again with all the lovely symptoms.

I plan on becoming pregnant within a year and I want to make sure Im healthy plus even though my daughter doesnt show any symptoms I want to make sure she gets tested through blood work. But Im not sure that can be done at 2. I dont want to put her through anything unnecessary that wouldnt be accurate like a biopsy.l

Are there any other considerations with celiac disease besides the diet for me? Should I be checked for other things? I plan on staying on this diet since I just cant handle the symptoms anymore but Im not sure thats the only thing that needs to be done and if its safe for pregnancy?

I'm sorry its a very loaded question but Im new to this and dont know anything about it.

Thanks for reading and responses

[dionnek]

Wow, you have all the same things I was "diagnosed" with when my dr's couldn't figure out what was wrong with me (PCOS, hypothyroid, asthma, sinus problems, insulin resistance, and anemia, to name a few). I also have an (almost) 2 year old daughter - my D didn't get bad until after my pregnancy - apparantely that's what kicked off my celiac. I just got tested (biopsy and blood tests) by my new dr. and also tested positive for crohns. If you are considering getting pregnant again, I would try to get tested for both of these things if you can - I'd rather know for sure! I've heard that tests for children are inconclusive until age 3 or 5 (depending on who you talk to), so I am going to wait and have my daughter tested when she turns 3 (since she is growing normally and doesn't seem to have any issues, and both my dr. and her pediatrician said nto to test her now). Hope this helps!

[SylvanArrow]

Hi Im Autumn Im 34 years old.

I came across your forum on a message board. I have had diarrhea everyday for 2 1/2 years usually after every meal. I was told it was ibs without any diagnostic tests. I also have many autoimmune diseases. I have pcos, insulin resistance, hypothyroidism, allergies, lactose intolerant and asthma.

I have a 2 year old dd after many miscarriages. During my pregnancy my diarrhea became really bad. I was at the point that my sciatic nerve would send shooting pains down my legs everytime I went to the bathroom. I assumed it was my ibs just getting worse since having my gall bladder taken out a little over a year ago.

I am severely obese 299lbs at 5 '11. I found information about the paleo diet and tried it. Just hoping to lose weight and be able to stay on it and to my happiness it took away my diarrhea completely. I started reading on it and I found out that I had similar symptoms to celiac disease. I hadn't heard of this before.

I feel great right now, all my symptoms are gone. My question is should I get tested? If I do from what I understand I have to go back on normal diet again with all the lovely symptoms.

I plan on becoming pregnant within a year and I want to make sure Im healthy plus even though my daughter doesnt show any symptoms I want to make sure she gets tested through blood work. But Im not sure that can be done at 2. I dont want to put her through anything unnecessary that wouldnt be accurate like a biopsy.l

Are there any other considerations with celiac disease besides the diet for me? Should I be checked for other things? I plan on staying on this diet since I just cant handle the symptoms anymore but Im not sure thats the only thing that needs to be done and if its safe for pregnancy?

I'm sorry its a very loaded question but Im new to this and dont know anything about it.

Thanks for reading and responses

Autumn, my gluten (and dairy) intolerance showed up on a regular food allergy test (the kind where they take blood and test you for like 95 different foods). It doesn't cost a whole lot (about $100), and it might be beneficial if only so you know what you can and can't eat. You might not need to be quite as strict as the hunter-gatherer diet.

[Guest AutumnE]

Thanks so much everyone. Sorry I havent gotten back on sooner. Homelife has become hectic lately but slowly starting to slow down. I have not been faithful to my diet but I have noticed 1 week after following to the letter. Side effects arent near as bad when I cheat Is this common with celiac disease. I was still tired and had a stomach ache for hours but not diarrhea or if I did it wasnt as bad as it usually is.

Also will my dr believe me about celiac disease being so overweight everything I have read talks about malnutrition and being too thin?

[Ursa Major]

Autumn, I was painfully thin as a child (a real stick figure ), but once I got pregnant for the first time, I just kept gaining and gaining, no matter what I tried. I started out with being 120 lbs. at the age of 26, to being 238 lbs last year in October. Nobody would believe me that I wasn't eating too much, because 'the evidence proved otherwise' (it did no such thing, of course). Once I went off gluten and starches, I started losing weight. Right now my weight loss is at a standstill, at around 210 lbs, but I have too many emotional issues to deal with to stick with just the foods I should eat.

My doctor didn't test me for celiac disease last summer, despite suddenly having all the other 'classic' celiac disease symptoms. She told me when I finally told her point blank that I have celiac disease, that she thought I had all the symptoms, but she thought it couldn't be celiac disease, because I wasn't losing weight!

You'll just have to inform your doctor of the fact, that unexplained weight GAIN is also a common symptom of celiac disease. Find some information to prove your point on the Internet and print it out for the doctor to read.

[debmidge]

Autumn, One piece of advice, not all gastroenterologists are equal. My husband went to several before he was properly diagnosed. They all diagnosed IBS, colitits, illeitis, and mental illness (one Dr. accused him of being a drug addict before he did any tests , accused him of going to him just for drugs - ah, this Dr. didn't give my husband any prescriptions at this point - but it was in the 1970's and my husband was very ill from the undiagnosed celiac and this Dr. just jumped to conclusions before he tested him for anything, but the accusation stung my husband as his response to Dr. was "What kind of a nut do you think I am to ask you to do a lower GI series? I don't want any prescriptions, just do the testing." This was the first Dr. he ever saw for his gastro problems and it was a Veterans Hospital (to their defense, they saw a lot of drug addict veterans who came in with phoney health complaints just to get drugs prescibed to them, so this Dr. must have lumped my husband into this category before he even took down his health history information and knew what his testing request was).

The last gastro he saw did the specific test for the celiac antibodies. This is the only gastro who used his brain and "connected the dots."

So if you get resistance from a dr. to do testing, etc. then consider firing him and finding another gastro. Your health is more important than a Dr.'s self pride.

It is my understanding, however, that if you get tested for the antibodies you must eat gluten for a few weeks before the test, otherwise your results will be a false negative.....then there's the endoscopy to see what, if at all, damage the gluten reaction has done to the lining of the small intestine. My husband waited a year, being gluten-free all that year, to get his endoscopy and at time of endoscopy Dr. did not find villi damage, but ulcer that was healing and other gastro related issues that weren't serious in themselves (GERD, etc.).

[brendygirl]

AUTUMN

I had such bad shooting leg pains (still get it from cross contamination-i'm not a gluten-free pro yet) and I thought I had sciatica. So did my dad- for 20 years he had such bad back and leg pain. Docs tend to assume it's muscular/skeletal problems--they wanted my dad to have back surgery many times- good thing he was such a chicken! Going gluten free has brought tremendous relief! I had one doc tell me I didn't sit up straight enough!! haha

[Guest AutumnE]

OMG Brendygirl

I have had horrible sciatica since the pgcy of my dd. I just assumed she messed up my nerves somehow in my back when I was carrying her since she kicked my spine all the time. I had no idea that it was related. I had been in therapy for six months due to it and it never helped. I was told it was my weight, sigh. For some reason obesity is the answer to everything or at least they think it is!

Wow except for the weight loss I feel like I have almost every symptom

I have not been following it well for the last four days, I am going to contact my dr in a few weeks. The pains are back, the tiredness is coming back, the diarrhea is back with a vengeance. Im sure I have this its too coincidental that I have all these symptoms and extra diagnoses that are related. Now I'm worried for my daughter. I hope she doesnt end up with this

Debmidge- I do have a friend who is a gastroenterologist I think he would run about any test I asked of him. My regular dr is a different story a bit cocky and doesnt listen too well sometimes. Im sorry your husband had to go through that, what a horrible ordeal.

Thanks for the advice I will probably be back with more questions soon

[Guest nini]

I was considered "morbidly obese" by my Dr.s... 260 lbs at 5'2". After several miscarriages I stumbled across the link between gluten and miscarriages and went gluten-free. I got pg again and after the first trimester my OB/GYN told me that the gluten-free diet was "bad for the baby" (IT IS NOT) and I let him talk me out of it... I went off the diet ended up with an extremely complicated high risk pregnancy and delivered my daughter 6 weeks preterm via emergency c-section because of numerous complications... During my pregnancy I also had such severe leg pain that I was told was sciatica, that would knock me to the floor it hurt so bad. I would have to sit down because I couldn't walk, the pain was so bad. After my daughter was born I continued to get sicker, my daughter was constantly sick and it wasn't until she was almost 3 that I was finally dx'ed with Celiac. After putting all the pieces together we had my daughter tested but her tests were negative. The Dr. told me she just had IBS... after that I got her pediatrician to support me in just trying the diet and viola! Miracle cure! My daughter is now a very healthy happy six year old thanks to the gluten-free diet. I have subsequently LOST 105 pounds in the past three years.

Now that you've heard my story, I will tell you my opinion. The most valid diagnostic tool is how do you respond to the diet? If you improve on the diet then you have your answer. Listen to your body. Dr.s do not take the time they need to with each patient to properly dx everyone. If you are lucky and get a good one, great, but if you aren't lucky and get one that isn't as up to date on his info and still believes that Celiac is rare or only thin people have it then you've had to spend that much more time being sick. My daughter was dx'ed gluten intolerant by positive dietary response... me, I had highly positive bloodwork, but didn't have the biopsy. Don't want it, don't need it, the proof is in how my health has improved on the diet.

[indyceliac]

You should get tested then go on a strict gluten-free diet...dont bother to wait for results. And yes, its perfectly safe during pregnancy...but consult a nutritionist if you need to..to make sure you are getting the proper nutrients.

Ive been overweight all my life and have always had symptoms....drs didnt want to test me..you have to insist on it sometimes. I think the diet will help resolve the other secondary issues, also.