Last wednesday I went to see my "new" liver doctor for the third time since we moved here. The doctor that was recommended to R moved back to his home country just as we moved here so I had to start looking for someone else. For some reason I had thought it important to see a european doctor and the selection was not big. When I found a german doctor I decided to go with him. I cant say I ever felt really good about him (if you can ever feel good about your doctor), he speaks eeery slowly with this crazy german accent and that makes him hard to understand. I have also been to see him "for nothing" twice as he didnt have any testresults. I take my bloodtests at Emirates clinic and they are then supposed to fax over the results to him at Healthbay but apparently it doesnt work very well. In jan when we went we didnt know about the problems they seem to have with Emirates clinic results but this time around I had learnt my lesson and emailed the gastro nurse to check if they had received the results before I made my appointment but still it turned out that they didnt have all the results, only a few. Im quite sure the fault is with Emirates clinic and not Healthbay but still, the nurse should have checked with the doctor before she adviced me to go ahead and book my appointment. My first appointment was a disaster when we were not sure if it was on a sunday or a monday and I called on sunday morning to confirm they told me that "yes your appointment is today" and when I got there they told me that my appointment is not until tomorrow! In the end they did arrange so I could see the doctor but with hubby and kids there the 1½ hr wait was like hell. Healthbay is also on the "wrong" side of town plus they dont have direct billing with Emirates which means that two years after joining and my AIH will be covered by the insurance we will have to pay for my visits and wait to be refunded the money "later on" and that would be ok for a 355 dhs (74 eur/60 gbp/97 usd, wow what a broad spectrum of english readers I have!) every three months but the doctor is talking about slowly reducing the medicine and phasing it out and finishing off with a biopsy and that will not be cheap so that would be a lot of money to fork out while waiting for the refund.

All those things are fairly small if you see them seperately but alltogether it becomes quite a big issue so I think I should at least try to find another doctor that both R and I can trust and that work at a clinic with direct billing!

Mum arrived on thursday night so I focus will be far away from internet and blogs but I will update when I have time. Right now we are preparing to leave for Medcare and A´s endoscopy.

We are back home from today´s visit at the hospital. We met the doctor and explained what´s going on. He asked a couple of questions, looked at the test results and said he doesnt think there is a need for a biopsy. I felt my heart sink, couldnt keep my mouth shut and told him about my worries. I told him I dont want to force him into doing something unnecessary but he said that its better if we get it done as with my baggage and earlier experience I will not be able to move on but will stay worrying about my son. What a relief! Now, when this has all settled a bit I worry that Im not doing what´s best for A, maybe I should have just let it go and kept on living with my worry. But on the other hand, he COULD be celiac even without symptoms and not eating glutenfree when you are celiac is not good for you. I realise how much influence doctors have got on us and how the first opinion you get will stick with you. Had today´s doctor been my liver doctor we would have never had this worry cause he would have told us A´s blood results were normal. I also understand how different doctors read different things from the same test result. Today´s doctor is convinced biopsy will come back negative. I sure hope he is right!

To give an update on A´s possible CD update I can say its been both uphill and downhill. The doctor I was recommended does not see children under 13 years of age so we had to start calling and calling and calling. Finally we found a hospital they didnt give a blank no but they said first we had to see a pediatric specialist who would refer us to the gastroenterologist if needed. It all happened really quick though and we got an appointment for the following day (yesterday). Yesterday we went to see the pediatric specialist and he couldnt understand why my gastroenterologist had ordered bloodtests for the kids when they dont have symptoms. Furthermore he didnt feel there was a need for biopsy if A doesnt have any symptoms and is growing well but he suggested that we would come back the following day so he would check with someone else to confirm. Since this was not what I wanted to hear I asked him for his reasons to tell us not to go ahead with biopsy I think he felt he didnt have any valid reasons so instead of replying he started making phonecalls and apparently talked to a pediatric gastroenterologist and started by asking her if she thought it was the right course of action to screen children with no symptoms just cause the mother has CD. I got a bit annoyed, I didnt like his approach, the bloodtests were done and the question was what we would do when we had these elevated results! Since this is not routine in Sweden or Malta I was sure she would tell him no but she said yes! The ped doc was surprised too and went on to tell her that the tests had already been done, he told her the details and asked if she thought it was the best course of action to do a biopsy. She said yes again! I was sooo happy to hear this and the doctor refered us to gastro! We got an appointment today and we are heading there as soon as we have picked up both kids from school and Im keeping my fingers crossed that we will meet a nice and understanding doctor....

I have been to the liverdoctor and we talked a bit more about A and his test results. Doctor wants to do a gastroscopy and biopsy however we decided not to do it with him. Our health insurance does not have direct billing with this hospital and that would mean that we would have to fork out some 4900 dhs (almost 1000 eur) to claim it back from insurance and I dont even know how long it takes to get it back. If we go to another hospital with direct billing they will bill Emirates directly and we dont have to be out with that amount of money. I was recommended a gastroenterologist at American Hospital (they have direct billing) so R went to see an GP at Emirates Clinic yesterday to get a referal. The GP got in his head, talking about how she, as a parent not as a doctor, would not put her child through a gastroscopy just from bloodtests if he doesnt have any symptoms. Instead she would introduce a glutenfree diet at home only and let him eat normally outside of the house. Instead keep checking his growth and make sure he following his curve. To be honest I was shocked with such advice.

A) Glutenfree products are really expensive so I would not buy that for someone if they didnt need it.
B) Why would I want to wait until he gets symptoms? I remember how poorly I used to feel
C) IF you switch someone on glutenfree diet any future test will not show proper results so you would have to switch back to normal diet to do the biopsy at a later stage and why waste that time?

Further to that I have read "Frequently asymptomatic children with celiac disease have autoantibodies to various organs such as antibodies that predict the development of thyroid problems or diabetes. When celiac disease is diagnosed in these children and a gluten-free diet is commenced the antibodies that predict the development of these diseases disappear from the blood. It appears that early diagnosis of celiac disease can prevent these other diseases that occur commonly in people with celiac disease. Early diagnosis can prevent the occurrence of symptoms due to celiac disease such as abdominal pain and diarrhea. The risk of malignancy in adulthood seems so far off, so many years away. However the diagnosis and treatment of a child dramatically reduces the risk of that individual getting cancer or lymphoma in adulthood!"

I think it might be easy for someone who hasnt been there to understand what it means and how important it is to get that diagnose ASAP, both for peace of mind and to start healing your intestine.

After some discussions we agreed that we will at least go for a visit to the gastroenterologist and see what he says, get a second opinion kind of. In the meantime my mum is also going to make some re-search as to what they would do in a case like ours back home in Sweden (for some reason I trust swedish doctors the most ;)