Help - what should I do next?

[Quinnie]

Hi there,

I have been struggling with symptoms of celiac for years (but have only recently connected the dots after stumbling upon an article about the disease).

My Symptoms:

• Horrible stomach pain
• Extreme bloating
• Diarrhea
• Fatigue and Lethargy
• Sore muscles (like when you get the flu)
• Headaches
• Brain Fog
• Nausea
• Anemia (3 blood tests over 18 months have all come back with extremely low iron, despite attempts to remedy it)
• Mouth ulcers

The only symptom that I don't have is excessive weight loss. In fact, I have the complete opposite: I have gained 30 kilograms (66 pounds) in just 18 months. On a diet where I eat no meat, no dairy, no refined sugars, no packet or junk food and very limited refined carbs (I eat only brown rice, wholemeal pasta and only occasionally have white bread). I work seven days a week, on my feet, and do bush walks, cardio on the treadmill + pilates. I have my low points with workouts, but I can say honestly that I do not deserve the crazy amount of weight that I have put on. When I first read that weight loss was a symptom, I was relieved, as I thought I could not possibly have celiac if that was the case. However, when I dug a little deeper, I found that there are plenty of weight gaining celiacs out there, too.

After doing my research, I was sure to include gluten in my diet every day up until I went to the doctor and requested a test. I had a blood test done (I think it was an IgA? I didn't actually see what test she ran, or think to ask) and got my results last Friday. In her words I was "on the sensitive side of the spectrum, but not celiac", which confused me, because I thought gluten intolerance is often discredited by doctors?

I had read through a fair few celiac stories and experiences by this point, and was actually prepared for a negative result. I had decided that no matter what the result was, I would cut out gluten afterwards and experiment with how my body felt without it in my diet. I had read about how hard some doctors make it to get a biopsy, and decided not to bother fighting. So, for the last five days I have been mostly gluten free (I say mostly because I finished off a bit of pasta, bread, etc. left over in my pantry for the first day or so). BUT, today I spoke with a lady that has recently been diagnosed with celiac (after a biopsy), and she told me that she had taken multiple blood tests which had come out negative, and eventually fought her way into getting the biopsy done. When her biopsy came back, she was told that her intestine was in the worst condition they'd seen in any celiac, ever. She recommended I go back on gluten and fight for a biopsy.

I don't think my doctor will be up for it, and if I were to get it done, I would have to change clinics. She told me that "all of my symptoms can be traced back to my anemia", and is convinced that my low iron is the cause for all the celiac symptoms I've been feeling. But anemia itself is a symptom of celiac, and I have never come across any information stating that anemia causes terrible stomach pain, excessive bloating, constant digestion problems, diarrhea, etc - ALL of which I suffer through on a regular basis. When I questioned her, she responded that "nausea is a symptom of anemia", which I am well aware of, but it does not account for the rest. I then asked her what her thoughts were as to why I was gaining so much weight, and she told me that I should either restrict my calories or go on diet pills!

At that point, I knew I was talking to a doctor that didn't want to deal with root problems, and was only interested in treating the symptoms.

I don't want to be difficult or argumentative, so I let it be. I figure if in six months a go back and make a new case about how my stomach is feeling, I might have a slight chance of getting that biopsy done. This would also allow me to detox off gluten completely, see if I feel any better, then reintroduce it on a "gluten challenge" in the lead up to the biopsy.

I'm just curious as to whether detoxing for six months and introducing gluten back in for a short period of time before the biopsy will show the most accurate results? Would it be more accurate if I did it in the next few weeks, considering that I have never been off gluten for more than the last few days?

I figured some people here with more experience might be able to help me!

(Sorry for the long post)

[CherylS]

Ask for a copy of the results of your testing.  You may be positive but your doctor doesn't believe in it.  I believe that is the first place to start.

I'm getting up on my soap box again..... 

You are the consumer, medicine is a business, you are in charge as it's your money and your body.  If your cell phone wasn't working, and had all the symptoms of a defective phone, and you took it in and said, my phone is defective it has all these problems and they looked at it and said, well maybe sorta a little bit, kthanks bye....  would you accept that?  Especially if people with the same phone with the same problems got their phones properly looked at and fixed, only because they went to a different store?

No, you would want your phone fixed.

Your health is way  more important than a phone.

I have autoimmune hepatitis.  I diagnosed myself off the internet and reading books (I'm a nurse).  I wasn't the typical emed freak out patient, I correlated my labs with what my reserach said, etc... My GI doctor thought I was full of carp... she was so offended by me.  I finally said to her, look, I mean no disrespect to you and your education, I think you're great or I wouldn't be here, but,  this is my body and my life, I have symptoms and labs consistent with AIH, you have no other ideas, what is the harm in doing a biopsy?

She was very apologetic when she called me with the liver biopsy results confirming AIH.  

Advocate for yourself please, you deserve real answers without being brushed off.