Just diagnosed – a few questions.

[Emma Chinn Profile]

Blood test was positive. I think it said IGA 98?
Biopsy done on Sat.
Consultant strolled by the bed when I was still in a haze of sedation and said I should look at the internet and follow a gluten free diet.
I need to call his office in 4 weeks to discuss progress according to my form.
I presume he will send the results of the biopsy to my doc?
How do I know how severe I am? Does this information come with the results of the biopsy?
Should I get a referral to a dietician?
Is it possible I am lactose intolerant too?
The consultant said my problem with cold feet and hands are a sign of the disease.

Did anyone else find that some of their friends and family didn’t believe the diagnosis? Apparently if I am not a waif then I couldn’t possibly have any problems! Argh!

[glutenator Profile]

Listen I hear you on the family and friends not finding the diagnosis credible but don't worry about that until you get the biopsy results. I found the book from the coeliac society great and this forum was good too. My specialist even went so far as to say the book was what the dietician was going to say anyway so save my money. You're at the beginning of a long journey so best of luck over the coming weeks.

[susanne5 Profile]

Well done on getting the biopsy out of the way.
I still haven't done that.
I had to wait over a year for a consult, by which time i had already decided to go GF.

Should I get a referral to a dietician?

You don't need a referral . You can go directly yourself.
Although all the info is in the coeliac book (do buy that!),
I went to a dietician and I found it useful as it highlighted a few things that were specific to me (vit d and calcium deficiency).
it cost 80 quid though.

Is it possible I am lactose intolerant too?

You could be , or it could be secondary to the coeliac.
ie It might only be temporary.
I went lactose free (buy soya milk) for a few weeks and it cleared it up.

The consultant said my problem with cold feet and hands are a sign of the disease.

I hadn't heard of this before as it relates to coeliac.
I had thought that cold hands and feet can be associated with hypothyroidism (another auto-immune disorder).

Did anyone else find that some of their friends and family didn’t believe the diagnosis? Apparently if I am not a waif then I couldn’t possibly have any problems! Argh!

Yes, I get this quite a lot. Its infuriating.
Being told that I am just a fussy eater is another thing i get .
For the first few days/ weeks of GF, I would advise you to have full control over your diet.
That means cooking most things from scratch.

With family, leave a few GF treats in their house(s) so that if you call over for a cup of tea,
you won't be tempted to eat the sweets or biscuits. (I found it hard to refuse!)

[anne burns Profile]

The biopsy should be reported on by the lab with a reading for each sample. The gut can be affected in patches so it is a bit and miss therefore recommended to take several samples. An american expert on same says to take 7 but my surgeon took 3 and there were no specific measurements for each one ( length of villii). These results should be forwarded to your GP.

Yes I was on the tubby side when picked up... can also be a symptom as body is feeling malnourished by poor absorption so hoards food by storing.... or that is one explanation.

Be wary that a lot of gluten free biscuits etc are full of other no no's such as fat and sugar. Yes the social aspect is probably the worst bit once you have gotten a handle on the diet. Really it is quite a healthy one! Find a bread that you like. I like the Lidl one and also Supervalu rolls and seem to have abandoned making my own.

Good luck and remember this is a great place to hang out for support/help etc

[maryc Profile]

HI Anne,

I notice that you referred to the Lidl bread. Is this available in all stores. I shop in Lidl quite regularly and have not come across this before. Is it their own brand? Sorry for all the questions but wld be delighted if I could get gf bread in Lidl. I know Aldi do one but unfortunately, they don't have a store convenient to either home or work.

Thanks,
Mary.

[anne burns Profile]

Oh my mistake, I am so sorry! I meant Aldi!

It is good price also.... it is not a soft bread but I like it toasted. Meanwhile Supervalu have brought out a sliced pan that looks good but I have not tried it. I like their rolls that are good enough to eat direct and can be piled up with fillings.

Anne

[Gookie87 Profile]

The supervalue seeded loaf is the nicest gf bread i have come across including the seeded buns which are great for burger buns! I agree with you Ann, i have never needed to heat them cos they are lovely and soft.

[Mariea Profile]

Hi Emma Chinn,

I hear you on the family thing too unfortunately - lots of tutting and rolling of eyes!! My 2 sisters where very bad at beginning. One still is so I have just given up on her. (I have almost 4 years GF). Although the last time we ate out as a family I was violently ill and all my 4 course meal came up within an hr and she was like, but you didn’t any bread/croutons? How are you sick? I was like…well this is why I have to be so strict, a tiny bit is enough to make you sick etc…I live away from home so I haven’t been in her house since…it will be interesting to see is she ‘believes’ me yet!!! I had a word with my other sister and told her good everyone else is, like people I wouldn’t expect would have went out of there way and got in some GF biscuits for me and how nice that it, and how upsetting it was that my family were not as supportive as other people in my life. Now she is not dismissive about my diet and sometimes has wee bits in the house for me to eat which I really appreciate.

I wasn’t a waif either when I found out! I had lost a lot of weight a few months before due to a parasite which lead to my diagnosis but at the time I was ‘all there’ – suppose it didn’t help that I ate takeaway every day for the 3 weeks coming up to my biopsy!!!
I have actually lost weight since going GF. I stay away from all the biscuits as they are far too sweet and I generally eat a lot of home make fresh food so that helps. (Althought I do love my chrisps!)

I was abit lactose intolerant when I found out also so I just didn’t eat chocolate and had soya milk (which I was taking anyway). I wasn’t very strict on the lactose free and it worked for me. I am fine now though.

In response to ‘how severe are you?’ It doesn’t really matter as you will have to follow a GF diet like everyone one else. They advise you to get bloods done every few months to monitor the levels in your blood. (Although you make have to inform your GP about this as in my experience they don’t really know). When these come below normal (under 20 I think) then your GF diet is working. This time frame is different for each person. Mine took 2 years to go down to normal.

I went to a dietician but found her no good. That’s not to say that all dieticians are not good. I just found that joining this society and using this website was the best way for me to get a handle on it.
I have had cold hands and feet all my life, I thought that was just the way I was, I never really thought about it. I have hypothyroidism also so maybe that’s it!!


Hope you are starting to get used to the new GF lifestyle.
Mariea