Lise

You've already had an endo and some testing.------- And one doctor thought you were a good candidate for celiac disease----

Why not just go totally strictly gluten free and see if your symptoms resolve????

I am thinking that is about the only option left... and probably a sensible one to take at this stage. I'd like to have a diagnosis, but it seems like a lot of people can't get one of those!!

The only thing is, I'm not sure I'll know if it's working. I can go a few weeks, maybe even months, with only some mild headaches and of course they could be caused by other things like bad sleeping habits or too much study. I'm not sure I'll know if the diet is making me feel better or if I'm just not experiencing any symptoms at the time... unless going gluten free will make me realise that how I feel on good days is not really that good after all! Has anyone else had this problem?

You've already had an endo and some testing.------- And one doctor thought you were a good candidate for celiac disease----

Why not just go totally strictly gluten free and see if your symptoms resolve????

I am thinking that is about the only option left... and probably a sensible one to take at this stage. I'd like to have a diagnosis, but it seems like a lot of people can't get one of those!!

The only thing is, I'm not sure I'll know if it's working. I can go a few weeks, maybe even months, with only some mild headaches and of course they could be caused by other things like bad sleeping habits or too much study. I'm not sure I'll know if the diet is making me feel better or if I'm just not experiencing any symptoms at the time... unless going gluten free will make me realise that how I feel on good days is not really that good after all! Has anyone else had this problem?

Yes, I believe you will always be IgA deficient, so you need to do a different blood test (I don't remember which, I hope somebody else will tell you).

Maybe that's IgG testing... that was mentioned in a couple of other topics. I wonder why my Doctor didn't test for that or, if she did, why she didn't mention it with the IgA testing.

Is anyone able to confirm that it is IgG testing? That could be something to pursue...

Unfortunately, your doctor isn't very informed about celiac disease. A gluten restricted diet is useless if you actually have celiac disease, it will keep you just as ill. If you want to know if you feel better without gluten, you need to go to a 100% gluten-free diet. In this case, it is all or nothing. Either you go completely gluten-free or you don't need to bother.

You definitely sound like you may have celiac disease. Only in the end stages will you be sick continuously. In the meantime symptoms will often come and go. And actually, yes, celiac disease CAN and will cause headaches.

Thanks for your reply. I think the Doctor recommended the restricted diet because, according to his tests, I didn't actually have celiac disease. But reading this forum, I know now those tests aren't all that accurate and maybe I do have it. I don't want to be tested for it by having another biopsy (yuk!) but maybe I can try the blood test again - is a person always IGA deficient? I'm going to look into trying the diet.

Given that headaches are a symptom, I've been having problems for months. I just put it down to reading too many law textbooks.

Thanks again

Hi,

I'm hoping someone here will be able to help me - there seems to be a lot of knowledgeable people here!! Essentially, I'm not sure if I have Celiac. I think I'll have to go through my history a little bit for this to make sense...

1. Age 11 -12: I had frequent upset stomachs. The Doctor thought I may have IBS, but as I stopped feeling sick after some time it wasn't pursued.

2. Age 17: Occasional upset stomachs accompanied with severe cramps. I put this down to Grade 12 stress, and as it went away after Grade 12 I didn't pursue it.

3. Age 21: Unexplained iron deficiency my Doctor thought may have been caused by slient Celiac disease. Blood tests were equivocal because I am IGA deficient, and an endoscopy came back negative. However, the gastroenterologist who did the endoscopy still thought I was "a vey good candiate for having Celiacs" and thought I might benefit from a gluten-restricted diet. By then, my iron deficiency was improving so I didn't try the diet.

4: Today (age 22): For the past three weeks, I've been experiencing bloating, painful and ongoing stomach cramps, headaches (though I don't think that's a symptom of Celiac disease) and sometimes also upset stomachs.

I am planning to go back to my Doctor if this continues and pursue the idea of a restricted diet, but I don't think she can tell me much more. So my question here is basically, do you think I have Celiac disease? I'm a little confused as to how I could have it but only be affected by it at certain times - I have always eaten gluten, so why would it make me ill at some times and not at others?

Also, does anyone know generally what a restricted-gluten (as opposed to gluten-free) diet would consist of - which parts and how much would I restrict?

Thanks for your help - this forum is really useful!

Thanks for all your responses.

I got the results of my biopsy today, and it was negative for coeliac. I actually cried. I was hoping this would be the answer to all my problems (including an iron deficiency, severe anxiety, and on-and-off stomach problems that were diagnosed as IBS when I was twelve, but were never really considered serious).

The reason for the testing was my iron deficiency. Now that they have ruled out gastrointestinal causes, my doctors seem to think that nothing further needs to be done about my low iron. I am worried about this because, as of my last blood test my iron had dropped 10 points in two months and I was close to becoming anemic. I started iron pills at that point (though stopped them for the endoscopy) so that may be somewhat better now. This seems significant to me, and not the kind of thing I just don't worry about investigating. Am I making too much of it?

If anyone has been in a similar situation or just has some advice, I'd really appreciate it. Thanks,

Elise

I'm not sure if anyone can help with this...

I was diagnosed with an iron deficiency about 6 months ago. After having a second blod test two months later, my iron levels had dropped by ten points. My doctor said this was deinitely unusual and, since all the common causes of iron deficiency weren't present, sent me to a gastroenterologist to check if I have coeliacs. I just got my endoscopy results from my GP, and she said I don't have coeliacs or any other gastrointestinal problems that may cause a deficiency.

Since gastrointestinal explanations for the deficiency have been excluded as a cause, she does not feel that my iron deficieny needs to be investigated further. The more I think about it, the more unsure I feel about this - ten points over two months is a fairly considerable decrease, and I'm not keen on taking iron supplements forever (which seems to be the only option as the cause of the deficiency cannot be explained and treated). Has anyone else had this experience, or have any suggestions as to whether I need to investigate things further?

Thanks for your help,

Elise

Thanks for all you replies! I had my endoscopy done on friday, and everything went fine. I felt a little sick and quite lightheaded afterward, but I think that was more to do with not having eaten for 18 hours (they were running really behind schedule... not good for my nerves!) I still wouldn't want to do it again, but it wasn't as bad as I thought. Thanks for all your responses beforehand!

Mattj - Firstly, I can't believe you did that without sedation, I very much doubt I would have gone through with it if I had been awake! I was also told by my gastroenterologist that everything looked normal to him, but I would need to wait for the biopsy results. He told me at my initial appointment that this happens to almost everyone, and it is really common for there to be damage that is not visible until the biopsies are under the microscope.

Apparently, it is rare for a gastroenterologist to be able to diagnose coeliacs without biopsies. Like Donna said, I think there would have to be a lot of damage done for it to be visible. I did read one post here where a member stated that they were told immediately after their endoscopy to start a gluten-free diet, as the damage was so obvious (sorry, I have no idea where that thread is!) So yes, I think it is rare that coeliacs can be diagnosed from damage seen during the endoscopy. I would think, for there to be visible damage, a person would have to be extremely ill - perhaps it is simply that people do not allow themselves to become ill enough that damage is visble during the endoscopy.

Thanks for your responses and advice!

Gypsyqueen - I don't think I could stay awake for the whole procedure either - I probably wouldn't go through with it if I was awake as it was happening! The procedure doesn't sound too bad, and my mum is taking me to have it done, so she will be there to drive and ask questions. I will definitely ask to be put under sedation as quickly as possible. The Gastro I saw seemed to have a lot of knowledge about the diet, and said that he would prodvide me with information on the diet and specialty stores, as well as a society I could join ( I am still eating gluten at thsi stage). However, I'm sure I will be back here for more help!

Donna - I was really glad to hear you have had a similar experience to me - anesthesia has also caused me to feel very unwell and to throw up. I'm glad to hear that the sedation did not have this effect on you. I will definitely mention this to the nurses on the day, and list it as a special concern on my consent forms. When you say they may be able to put something in or adjust the dose, are you referring to an anti-emetic or anti-nausea medication, or just to being given a smaller dose of sedatives to mimise the side effects?

Thank you for you help,

Elise

Hi Everyone,

I'm new to this forum, although I have spent some time reading the information on this site - I learned so much here, so thanks already!! I'm hoping someone here can answer some questions for me!

I first heard of Coeliacs about a month ago, when there was no explanation for my ever-worsening iron deficiency (discovered due to a routine doctor's appointment where I just happened to ask about some significant bruising I couldn't explain). A blood test for Coeliacs showed that I was IgA deficient and therefore could not be diagnosed this way. As such, I was sent to a gastroenterologist. I had my appointment with the gastroenterologist today - he is really nice, knows a lot about Coeliacs and thinks I am a 'great candiate' for a diagnosis of Coealics. However, before he diagnoses me, he wants to do and endoscopy while I am under sedation...

and I am SO scared. I've hated hospitals all my life (at eight, after having my tonsils removed I screamed at the nurses, pulled out my IV and hit a nurse across the face, all before I woke up in recovery!). I'm hoping I will be a better patient this time, but I'm still concerned about the procedure. I understand that it doesn't take long or cause much discomfort and that there are few risks involved. What I was interested in are other people's experiences with the sedative.

I have a serious (albiet stupid) fear of vomiting. My gastroenterologist assured me that there would be no gagging or vomiting during the procedure (and after all, I will be asleep), but I'm concerned about the side effects of the sedative. If anyone could share their experiences of the endoscopy and/or the sedative (especially regarding the side effects and if it made them ill) I would really appreciate it.

Thanks so much for all the help,

Elise