How many of you feel worse on a strict GF diet than before diagnosis?

[FionaGFG]

Some Classic and asymptomatic (aka Silent) Coeliacs feel worse on a GF diet than they did before diagnosis. This maybe as other health problems have emerged or you're suffering continued nutritional and vitamin deficiencies. Share your perspective?

[katiespicer]

Yes I was tested endlessly last summer before they came up with the CD diagnosis. Before they did they discovered Helicobacter Pylori, gastritis and a Hiatus Hernia. I am still suffering from the hernia so I don't feel better at all since being diagnosed. I am still awaiting the fantastic feelings that people say they get once on a gluten free diet!

[India1]

I'm still waiting for that too, Katie! Most of my symptoms aren't much better, some are worse and some whole new ones have appeared. I'm awaiting the results of a follow up endoscopy but I know the coeliac blood tests is now negative, so I don't think I have refractory coeliac disease - I guess it's just a slow process. I used to love food but now I'm waiting for the day I can have a complete meal in one little pill...

[FionaGFG Administrator]

Well you're definately not alone. My own personal perspective is 3yrs on and I'm still waiting for things to settle despite being strictly GF. My hospital were pretty good and I've had testing for lactose, fructose intolerance (both negative), abominal scan (too gassy and bloated to view anything!), camera pill (showed significant damage of villi still) and a 2nd endo (which showed healing had begun). The Docs tell me it can take many years to heal which is frustrating esp when you are very careful and blood results are 0.

It's well worth asking for other tests to rule out deficiencies, intolerances and put your mind at ease. Sometimes other problems that aren't related to CD at all can cause similar issues so always worth checking e.g. hormonal imbalances, other auto-immune problems like Thyroid.

I'm looking into creating a food diary/ following the FODMAP diet which my dietitian recommended as a last resort. It can be a pain feeling like a whale and having maternity wear in the wardrobe as a back up!

[katiespicer]

I was only diagnosed in August and have an appointment with the dietician in a few weeks so will see what they recommend. I thought I was being strictly gf but then it turns out Cadbury's hot chocolate has gluten in and I have had a few of them since August. I am now following the blood type diet as that seems to make a lot of sense to me. Lot's of the foods I eat were on the list to avoid for type Os so I wonder if this has anything to do with the gas and bloating still? The only issue I have is that I am restricting my diet even more and making life more difficult but then if it makes me feel better. I have given up coffee as suggested and I think that has definitely helped the acid reflux and gastritis, as I have stopped taking the lansoprazole now

[Lexy]

I'm just over 2 months into my gf diet. I'm finding that officially 'gf' breads and rolls and biscuits are simply not agreeing with me. Getting gassy and a bit bloaty. I find this very disappointing. I also find it with gf-pasta, I end up feeling 'heavy' (not quite as bad as with normal pasta, but no far off it). Argh!

[SammieXo]

I feel the same again after only 5months on the diet. I think im developing more problems im always anxious about what i eat now which is causing me worry all the time