Gluten Free Guerrillas
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had endoscopy about 6 weeks ago. but I have had no firm diagnosis. Is there anythere I can do in the meantime?

results showed that there could be increased ceoliac risk

have started eating gf foods but as want to lose weight I don't know how to proceed without advice from dieticians.

I am in limbo so drained and tired and craving sugar to keep energy levels up.

12 Replies

I often feel like this I am wheat intolerant not coeliac. I have had bloods and endoscope and colonoscopy all negative. I also get DH, mouth ulcers and lots of the symptoms but enough of that. I think gf free is a great way forward, it does take time though to get out if your system. As your body is holding onto the bad stuff it is difficult to lose the weight but it will come off once you start eating a gf diet. I also crave sugar to keep my energy levels up, I have an underactive thyroid which causes me to be drained and tired. Ask to be tested as sometimes these are linked. Dietician should help get you on a good healthy diet, I always thought my diet was rubbish but the dietician advised that I only needed to eat more calcium. Good luck


Hi Janey39.

This is very interesting. I thought that dh was the ultimate unique coeliac symptom, meaning that if you're diagnosed with dh, you have an automatic coeliac diagnosis and no further testing is required. I didn't realise that you can have dh and not have coeliac.

There are so many things to discover about this subject; I never really know if I know stuff. I'm wearing google out!


Thanks Janey39 this is definitely food for thought , I may have to consider this as well.


cheekyk1d, have you had your thyroid tested as well? You describe exactly how I was feeling when I was diagnosed hypothyroid, down to the sugar craving. Coeliac and thyroid disease often go hand in hand.

When I went gf my insides turned to concrete. I now make sure I avoid xanthan gum and eat lots of flaxseeds. After an initial interest in the gf shelf at the supermarket, I now avoid most of it and just eat fresh food.

Good luck. When you've given yourself some time to absorb everything, you may find it a bit easier. It can seem overwhelming at the beginning.


Thanks Hollyann again it may seem like a thyroid issue will pursue it.


Hollyann, yes it very interesting and I still do not understand how I can have DH and wheat problems but no ceoliac but that's what I've been told and have had the ceoliac blood testing done four times. Not sure if it's all thyroid linked, feeling more full of energy now that they have upped my thyroid meds and my DH seems to have cleared up for now.


You should ring your GP and check if the blood tests you had were positive and whether there has been an update on the Endoscopy results. Also discuss whether it is worth you going GF.

If you do decide to go GF on the basis of that conversation avoid:

- wheat, rye, barley, oats, spelt and their derivatives e.g. soy sauce, malt vinegar, Worcestershire sauce

- Try and combat sugar cravings with natural sugar from fruit as going gluten free can make you pile on the weight as your stomach begins to absorb food properly for the first time

Personally I would not enter into a GF diet unless I had confirmation from the blood tests and endoscopy that I needed to as it can be difficult and isn't healthy unless you are a coeliac.


I definitely might try natural fruit sugar for those cravings and hopefully will hear from consultant soon.


FionaGFG, that's really interesting. In what way is it considered unhealthy?


The gluten free diet is unhealthy for 'normal' people, (without Coeliac Disease or a gluten intolerance), because it is low in fibre and doesn't contain the grains required to help lower cholesterol. In addition the typical gluten free diet means cutting out traditional cereals that are often fortified with other nutrients and vitamins that are important e.g. folic acid, calcium, iron etc for example in normal breakfast cereals. Diagnosed coeliacs have annual health checks whereas people who jump on the gluten free diet risk damaging their health without any regular medical advice/ support.


I looked up DH on google and found out that it is a wheat intolerance "linked possibly" to coeliac disease,,,, saying that I saw my GI after I went GF following the endoscopy but prior to diagnosis and told him that my skin had significant improvements since being GF, I also had photos of the rash and he said "yes it is coeliac disease" he did not call it wheat intolerance.

I do know that we need a diagnosis before we can get any type of GF prescription, but I have found like a lot of old hands that my interest is waning re biscuits/bread/cereals.


I have now been wheat free for three years but still get DH flare ups probably when things have been sneaked in when eating out, I don't eat out often because I don't trust restaurants to take it seriously, for years I would not eat out at all. I am allergic to MSG too which Chinese and Thai put in their food and some crisps.

I try not to eat too many sweet things but have eaten gf biscuits from the supermarket and they do the trick. Warburton bread is good for me i dont like all the other breads and I've tried to make my own and it just ends up like a brick.


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