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kam00096

How do you know what's causing what?

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Hey guys just looking for a bit of advice. I got 2 positive blood tests for celiac and found out my vit D was very low and parathyroid was elevated about 2 months ago. Went gluten free soon after and haven't cheated. Around the same time I had unrelated health issues that made me extremely constipated and when I finally got over that I felt much better.

Now though another month on I seem to have gone back to feeling exactly the same as I did before I went gluten free. I'm having almost all the same symptoms and for the last few days my stomach's been awful. I don't know when I'll finally get to see a gastroenterologist as waiting times on the nhs are crazy and I'm floundering. I've read online it might be a lactose intolerance but I don't really want to cut it out without speaking to a health care professional (I'm vegetarian so already very restricted!). I know it might be too soon to be seeing a difference but I keep hearing about people feeling almost complete better after a couple of weeks so I'm disappointed. I'm also worried I might still be getting gluten but I don't know how sensitive I am/ what I'm reacting to/ how careful I have to be! 

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Welcome to the forum!  

Well.....in theory you should be able to heal within a few months (grow new villi, etc.).  The reality is that it takes so much longer -- like a year or two (I kid you not!)  Why?  celiac disease can damage more than just the gut.  Depending on what was damaged (nerves, bones, etc) can impact healing time.  The gluten-free diet has a very steep learning curve.  It's not just giving up gluten.  It's avoiding cross contamination.  Becoming an expert in reading labels.  Learning to avoid foods processed on shared lines in a facility.  Then there are intolerances that most celiacs develop.  The most common ones is lactose.  Why?  The villi tips release the enzymes to digest lactose.  No villi tips?  Then you can not digest lactose.  Often this is temporary, but if you are one of the many adults in this world, you might already be lactose intolerant or might become so as you age.   Other intolerances that members often report include corn or soy.   Some celiacs react to oats, even gluten free.  So avoid oats for six months. 

So, try cutting out dairy for a few days and see how you feel.  Then add in those items that have the least lactose:  hard cheese, butter, yogurt and see how you feel.  

Avoid eating out for six months until you have seen some improvement.  

Read our Newbie 101 thread under coping for more ideas! 

Hope you feel better soon. 

 

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Hi Kam,

If you are going to continue the celiac testing with an endoscopy, you need to keep eating gluten until it's done.

It can be hard for vegetarians to keep their vitamin D levels up.   This Vitamin D  Council link has some good info on ways to boost your levels.

https://www.vitamindcouncil.org/about-vitamin-d/

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I am in same boat, yesterday my stomach was churning and bloated and I don't know what the cause was. 

How about keeping a food diary? Just note what you ate and how you feel. A few days may be sufficient to discern a pattern, either some rogue product or a previously unknown intolerance. I have read that after gluten is removed further intolerances which were hidden can become apparent. :unsure:

I don't know whether you could cut yourself some slack from a full vegan approach whilst your body heals? If not, maybe you could substitute say milk with coconut milk or similar to give your body a break whilst keeping calcium levels high?

If you join coeliac uk you can check your sauces etc on their gluten-free database, they'll also send you a book which became my bible until I got a hang of which brands I could eat safely.

Finally, have you excluded cross contamination from pots and pans, toasters, shared condiments etc? 

Good luck!

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Hi Kam, 

I second everything that Cyclinglady has told you, but just to let you know that I be me intolerant to dairy before my diagnosis for coeliac disease. The 2npositive tests, were they both blood tests or one blood test and one endoscopy? If you are waiting to see them in the Endocsopy department, I think they will want to do one if you haven't had one already and in order to do this and get the correct result, you must eat gluten for at least 6 weeks before you can have the test done, because it is the gluten that causes the auto-immune result. 

I too have a thyroid disorder, which was diagnosed long before I had been diagnosed with coeliacs disease. Also a couple of years after diagnosis I became intolerant to soya and xanthan gum and E464 (hydroxypropl methyl cellulose) which is quite often found in gluten free baking produce, including bread. A food diary is a good start, which has also been suggested, but don't jump the gun if you haven't had an endoscopy with biopsies yet.

It is still possible to carry on with gluten free and dairy free diet if you are vegetarian, but it makes it a little harder and don't forget dairy free milk is usually fortified with vitamins and minerals.

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Thanks for the replies guys. I'm not having the endoscopy, or at least I'm not doing the gluten challenge. The wait for an initial consultation with gastro on the NHS where I live is 18 weeks and then another wait after that for the scope. I was so ill and had been off sick so often I was at risk of losing my job so decided to go gluten-free and just stick with it. 

Thanks for all the info on other intolerances. I'm guessing lactose is not doing me any favours at the moment. Will defi start keeping a food diary. Thankfully have felt a bit better today - just get scared when the dizziness and stuff starts up again (like yesterday) as it makes me too ill to work or drive. I'm thinking about reintroducing meat at some point when things settle but in the mean time I'm just trying to stick with whole foods (not easy though!). Oh and am on a super high dose of vit d from the doc so hopefully that'll kick in soon! 

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