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Just wondering what the Drs have tested you for based on your symptoms, and what did the labs show?

The more I read here, the more I'm seeing that labs are not that reliable (?)

In 2007 following child birth and surgery the endocrinologist tested for everything. My thyroid was swollen and border line. My liver enzymes were high. He wanted to check for a brain tumor. Told me to loose the baby weight and see HIS nutritionist. Made my dh think everything was in my head because dr said labs were "fine"

In 2009 I went to the neurologist. They again ran a ton of labs and my ANA came back positive. Because there was no tieter it was a false positive. I had a rash (still not sure it was the butterfly rash) and my joints and muscles always felt like I had the flu. I would sleep sometimes like 15 hours and still be tired. Neuro gave me antidepressants. Sent me to the sleep specialist.

Sleep specialist wanted to do a sleep study and a nap study. Wanted to innediatly take my tonsils and andenoids. I thought he was full of crap so I never went back.

My gp told me I had IBS in 03. Put me on Zelnorm when it was on the market.

Went to see the gi in 03 also, who again told me ibs and I needed more exercise and more water.

Now that all these Drs couldn't find anything "wrong"(on paper) certain people in my family think I'm making it up and don't believe I have an issue.

Also was told I have a very low vitamin d count, I'm probably lactose intolerant, bad allergies with chronic sinusitis, depression, OCD, pmdd, low iron(seems fine now) depressed, ppd, and ibs.

My last gp tested for celiac, but I had been gluten-free prior to testing but no one around here understands that it makes the year invalid. He told me ibwas probably just gluten sensitive and to stay away from it. Finally, a dr with some common sense.

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Just wondering what the Drs have tested you for based on your symptoms, and what did the labs show?

The more I read here, the more I'm seeing that labs are not that reliable (?)

In 2007 following child birth and surgery the endocrinologist tested for everything. My thyroid was swollen and border line. My liver enzymes were high. He wanted to check for a brain tumor. Told me to loose the baby weight and see HIS nutritionist. Made my dh think everything was in my head because dr said labs were "fine"

In 2009 I went to the neurologist. They again ran a ton of labs and my ANA came back positive. Because there was no tieter it was a false positive. I had a rash (still not sure it was the butterfly rash) and my joints and muscles always felt like I had the flu. I would sleep sometimes like 15 hours and still be tired. Neuro gave me antidepressants. Sent me to the sleep specialist.

Sleep specialist wanted to do a sleep study and a nap study. Wanted to innediatly take my tonsils and andenoids. I thought he was full of crap so I never went back.

My gp told me I had IBS in 03. Put me on Zelnorm when it was on the market.

Went to see the gi in 03 also, who again told me ibs and I needed more exercise and more water.

Now that all these Drs couldn't find anything "wrong"(on paper) certain people in my family think I'm making it up and don't believe I have an issue.

Also was told I have a very low vitamin d count, I'm probably lactose intolerant, bad allergies with chronic sinusitis, depression, OCD, pmdd, low iron(seems fine now) depressed, ppd, and ibs.

My last gp tested for celiac, but I had been gluten-free prior to testing but no one around here understands that it makes the year invalid. He told me ibwas probably just gluten sensitive and to stay away from it. Finally, a dr with some common sense.

My tests and results were all very similar to yours except for the IBS diagnosis. I can't remmember years but basically it went like this:

Summer after my first year of grad school I tried eating "healthy" which involved eating more whole wheat products. I started having severe C, ended up in the hospital more than once with bad gut pain, vomiting green stuff with a fever that they couldn't get down and kidney infections. The first hospitalization they did an ultrasound of my entire lower right quandrant and found I had kidney stones and gallstones. Said the gallbladder would likely need to come out but I could get with my dr and try to regulate it with diet. I tried to do the gallbladder diet--which involved low acid, low fat and lots more wheat products for about a year--and was sick as can be for most of that year. The third time I went to the hospital with intense pains and high fever they did an ultrasound and said it looked like some stones were lodged and I needed to have my gallbladder out immediately. I had it out and expected everything to be back to normal again. I was told loose stool were common after having the gallbladder out and I should still avoid a lot of fatty food to prevent it.

I was better for about the first year, but yep that "fatty food"--burgers with buns, pizza, etc. Just went right through me. I was severely anemic both before and after the surgery and that didn't change even taking iron pills.

About a year or two after my gallbladder surgery I was a mess--

I slept about 12-14 hours and didn't feel refreshed, just felt more tired.

My muscles and joints ached and I had spasms and bad leg cramps.

My hands started shaking for no reason.

I started having small seizures--at first they were not sure if I was fainting or sleep walking and fallign down--I never recalled the events right before the seizures. I would just wake up on the floor or someone would find me on the floor. Finally my husband saw one happen and was able to describe to the dr how my eyes were wide open and rolled back in my head before the fall (he caught me mid-fall) and some other symptoms as well and the dr confirmed this was not a normal fainting but was more indicative of a seizure.

I had sleep studies done testing for: sleep apnea, narcolepsy, and epilepsy. Found nothing.

I had a postive ANA test, but when they followed up with another test it was negative for lupus.

I had a to wear a heart monitor for a week. Found nothing. The cardiologist told me I needed anti-depressants. I didn't go back to him.

I had an entire MRI of my spine done and they found nothing.

Thyroid tests found nothing.

My dr told me I couldn't drive (despite the fact that they didn't know what was wrong with me). My job told me not to come back until a dr had medically cleared me to work. I had to take a leave of absence from grad school (my memory was terrible and I lost the ability to read more than a few sentences). I was bed bound for several months, barely able to feed myself--I remmeber not being strong enough to stand up and put food in the microwave. Everything I ate seemed to make me sick to my stomach so I ate mostly crackers or toast (which of course made me worse).

My husband graduated, got a regular job and we moved to another state, where I had to start all over again with drs. I decided not to and started searching the internet for my symtpoms.

I have had evironmental allergies and asthma all my life but they got ten times worse during this time. I was always having sinus infections and asthma attacks. The constant sinus infections led me to do some research into allergies and I found out about mold and candida. I had lived in a house with black mold. I read some of their other symtpoms and it seemed to fit the neuorlogical symptoms I had. I also read some about elimination diets for figuring out food allergies (I had developed an allergy to pork and mushrooms during this time and had already been allergic to shellfish for a decade).

Drs had not been able to help me with all of the above symptoms. So I figured what was the harm in doing an anti-candia/elimination diet to find out if the food I was eating was related.

I started in January 2010 by cutting out all grains, all sugar except for small amounts of hoeny, all fruit except for berries, all dairy, etc. I ate only fresh organic meat (chicken and bison mostly), vegetables and some berries with honey. Only used olive oil for cooking. For the first few weeks I felt aweful and then I felt better than I had in years. I started to read on low carb forums to get ideas for meals to stick with this new radical diet. I did it for a month and then decided to start adding things in to see if I reacted. The people on the low carb forum that had candida were unable to add anything with carbs back in wihtout getting sick. I was overjoyed however when I successfully added potatoes and rice and had no relaspe in my symptoms. Barley made me sick again and bread made me really sick too. Someone on the low carb forum posted that they had suspected candida but it turned out to actually be celiac disease. That's when I started researching celiac and ended up here. Everything fit for me to have a gluten intolerance or celiac. The only other thing I was unable to add back to my diet was soy products (and that was pain to figure out). And later dairy gave me more problems too (see my siggy).

Since I had been gluten-free for a good 6 months when I figured out that this was not candida or just food allergies, my drs are unable to test me. However my new dr told me based on my symtpoms and family history it's very likely I have gluten intolerance. She is certain from some of my tests (like the positive ANA) that I have an auto-immune disease, but won't write celiac on my records (understandably so!).

Since going gluten free:

My iron has resolved itself and I am no longer anemic.

My hair stopped falling out.

I have not had anymore seizures.

My hands don't shake.

I sleep a normal amount of time (6-8 hours) and wake up with energy.

The muscle pains and joint pains are gone.

Balance issues (gltuen ataxia?) are gone.

Memory is MUCH improved.

loose stool that I had been told was just a result of having my gallbladder out is no more (unless I get glutened).

And many, many more things...I don't need a diagnosis (though it would have been nice to have before I got really bad). I'm convinced and my husband is convinced. I did have a few weak moments early on where I decided to test eating gluten again. Not only was it not worth it to make myself so sick, but the food tasted nothing like I remembered.

It's normal to go through that "not sure" period when you don't have a firm diagnosis. You need to be very clear with your husband about what happened to you when you cheated and tell him you need his help and support to not go through that again. If you are going to stay gluten-free without a diagnosis, then you need to find a way to remmember what all happens to you when you eat gluten. Write it down in a journal if it helps and reread those journal entries when you are tempted. Think of gluten as poison and act as if it is poison for you. Write down all the things that you have missed out on from being sick (for me that was a huge thing--my life was ruined by gltuen and I have no desire to go back to being bed-bound with pain). Write down all you can do when you are not sick (spending more time with family, going places without having to make note of where the bathrooms are, etc). Whatever will motivate you to stick to the diet (assuming it is helping you feel better) do that.

Your husband will come around when he sees that you are sticking to it and how much better you are. If he doesn't notice a change you may need some couples counseling to help him understand how much better you feel without gluten and so you can both get ont he same page. Other people in your life don't need to know what the test results said. Tell them simply you were very sick while eating gluten and your symptoms resolved gluten free. Or tell them your DOCTOR diagnosed you as gluten sensitive (which he did) and told you to strictly avoid it. Or tell them nothing and just go about your life eating gltuen free. It's relaly none of their business anyway and you can avoid having the conversations about accomodations by just insisting on taking care of yourself and bringing your own food to family events. They will get used to it eventually, even if they don't beleive you have a real problem with gluten they are more likely to respect it when they see you doing it strictly.

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