Hi all, I was recently diagnosed with coeliac disease after having a short period of stomach pains and discomfort that would come on after eating meals. Between my initial visit to the doctor and the endoscopy (which confirmed coeliac disease) the pains I was having had totally disappeared despite me continuing to eat a gluten containing diet.
Since the diagnosis (2 months ago) I have moved to a gluten free diet where I have now started to experience stomach cramps and pain again. Is it normal to continue to have symptoms of coeliac even with a gluten free diet? If so what is the normal time frame to expect such symptoms to disappear?
My concern at the moment is that I was misdiagnosed and that my symptoms are related to something else and being on a gluten free diet is doing nothing for me other than being an inconvenience
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Golfskud
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For the celiac confirmation, was it by endoscopy? I presume they had a good look around to rule out an ulcer.
Gall stones can cause a spasm like cramp especially after rich or greasy food. Any connection here?
Celiac can also be dairy, specifically the casein protein which is similar to gluten.
Any wind associated with the pain/cramps?
Any issues with your B12 or folic acid levels? Unfortunately they will say you are “normal” right down to the lower limit so get the numbers, if they test you.
Being diagnosed as a Coeliac is a very confusing time. If you’ve had an endoscopy in the UK, then you will probably have also had the Coeliac blood test first. To have been mis-diagnosed by both of these tests is highly unusual.
What I found happened to me, is that I was given my diagnosis and then more or less left to my own devices - with little follow-up support unless I asked for it. It took many months to unpick each and every symptom I was experiencing, as well as know just what I should be asking for and why.
I would suggest that you probably do have Coeliac Disease and that it may have also caused you to have secondary food intolerances. This is quite a commonplace occurrence. Good luck finding out what they are if this is so! One of the most frequent ones is dairy - which unfortunately is one of mine. Keeping a food diary might help you figure things out.
As pvanderaa has said it is also very common for new Coeliacs to have a number of vitamin and mineral deficiencies - so it would be wise to chase this up with your doctor, just in case it’s causing your problem (don’t be afraid to ask for the exact numbers so you can evaluate them for yourself - it allows for a much more informed decision making process in the long run). Or maybe you have a co-morbid problem that’s nothing to do with having Coeliac Disease. Again it’s worth asking your GP about.
Whilst we are on the subject of deficiencies, do also be aware that in the UK you are also entitled to go for a bone density scan to check for osteoporosis (which I would recommend you do).
The other thing to be mindful of is cross contamination issues. Are you using your own dedicated jams, butter, spreads (to avoid any crumbs from double dipping), toaster, wooden spoons, sieves, baking trays and colanders etc? And are you being careful when eating out?
Please DO continue to be gluten-free, as in the long term it will be much more beneficial to your overall health. However as your body adapts to the new diet, you may find that your sensitivity to gluten increases.
Btw, whilst not strictly relevant, consider mentioning to your first degree relatives ie. anyone who is a son, daughter, parent or sibling that they should be screened (have the blood test) for Coeliac Disease. They have this right under NICE guidelines NG20. Coeliac Disease is definitely not contagious (as it’s an autoimmune issue), but it does have a genetic component which increases their risk from one in a hundred to a more significant one in ten because of your own diagnosis.
Finally, take it one day at a time and hopefully things will start to improve soon.
Just to add to the advice given: if you are eating processed gluten free foods, such as supermarket bread, you may find that this is affecting your digestive system. The additives in lots of ready-made gluten free foods can cause gut problems for some people.
I would also like to add that it actually takes at least 3 months for the body to clean up properly, even though you become symptom free.
It also seems to be quite common to become really sick when the body is throwing out the last pieces of garbage too. After approximately 2-3 months.
And the symptoms of getting glutened can worsen when your body is feeling better. Suddenly it all comes pouring down at once.
Also remember that Coeliac comes with different treshholds to how much gluten one can eat. Some won't get any symptoms nor damage even if they eat 50mg a day, others get damaged by what seams to be nothing at all.
Some won't get any symptoms even though the gut remains damaged.
The standard for food to be called gluten free is 20ppm, or less than 2mg gluten per 100 gram of food.
It's not the daily consumption, hence eating many foods with derivatives from gluten grains adds up to the daily amount of gluten you eat per day.
Before you know your own treshhold it might be a good idea to stick with naturally gluten free products to ensure healing.
But do not become distressed if you cannot eat millet flour or oats either. They always seem to contain gluten to some extent, by cross contact.
And if you keep feeling symptoms, you could also consider derivatives that doesn't need to be labeled but still causes distress to some with coeliac.
(for instance: dextrin, glucose syrup, ethyl alcohol etc can cause sickness IF derived from wheat or barley in very sensitive people)
Be aware we react differently to what we eat. A friend of mine became ill from chemicals used to valet the car. They changed the car. So look at your environment.
By eliminating certain foods the symptom might be instantaneous. Try eliminating food groups to see what happens. If foods have no noticeable reaction try changing your environment.
GF may just be part of the story. Have fun working out what is wrong.
A couple of years after being diagnosed with CD I was then given another label IBS (which I have totally ignored because it restricted my veggie GF diet even more). I discovered very quickly I could not eat oats (not unusual apparently) or rice (contamination) for nearly 2 yrs after diagnosis. I have also developed over the years (almost 10 now) a reaction to certain makes of GF bread (additives) so I just avoid eating varieties which cause me a problem (and also those that generally have the taste and texture of cardboard). Not easy and as someone else said aftercare was none existent except when asking for it. Join CUK and look at everything you can eat and stuff you are advised not to. Hope you feel better soon
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Potential coeliac-related lactose intolerance..?
Am I a coeliac?
will any private hospital test for cd without a gp referral?
Oh, I'm 'super sensitive' don't you know......gluten free labelling of a different type!
Milk protein allergy and coeliac disease
