New symptoms since going Gluten Free
Posted , 5 users are following.
I was diagnosed as having Coeliac Disease last October after finding out in the summer I had chronic anemia which resutled in a blood transfusion and eventaully led to CD testing which came back borderline on blood test but positive on biopsy.
I had suufered with constipation for years (even since a child) and severe bloating after eating certain foods, but was told I likely had IBS when I visited the doctors in my early 20s. Since going GF I rarely get constipated, and although I bloat now and again, it is nothing like before.
I just wanted to ask all the coeliac's out there, since being diagnosed I have found I suffer from terrible health anxiety. I wanted to ask if anyone else had new symptoms since going gluten free. Since being diagnosed, I have had a various times since: post nasal drip, hives, viral infection, issues with my mouth, including a red spotty tongue, sore gums, a rash on my lips an ear infection, acid relfux. a rash on my neck.
All of which I had never experienced before being CD. I am wondering is this my body regenerating itself - now that I am taking in all the nutrients I was lacking, or could it be related to anxiety? I am trying lots of things to reduce stress and anxiety, but I wondered if anyone experienced similar symptoms before getting better? In other words, will this pass!?
Any advice greatly appreciated
Abi
1 like, 8 replies
laurie99463 AT30
Posted
Hi AT30 (Abi),
My CD was latent throughout my early years. I knew that in my ansestory several males had died from nurishment starvation - we made excuses that they all must have been heavy drinkers. Our of nowhere I had a heart-attack. I'd passed all my cardio testing up until that time and I am a health professional. Six months following the attack I went from 186 pounds of muscle (7% - 9% body fat) to 132 pound of very sick weakling. Doctor's believe the heart attack brought the CD to full force. That is my brief history. Now, five years later, I pretty much know what to avoid - including (in my case which is rare) apples, coffee, FODMAP foods and others. It is a lousy disease but we can manage it with good support. YES! All of the things you are experiencing are normal and, unfortunately, they can be exacerbated by anxiety; a viscious circle. Make certain you are writing a journal. It takes, on the average, 18-months to truly determine what will and what will not cause sickness or symtoms. As mentioned, many non-glutin items can create the kind of upsets you are experiencing. Be patient. Control what you can. Write a journal of what you eat, how you feel physically and emotionally. This will be a vital tool in your well-being! Loads of love and prayers! L
AT30 laurie99463
Posted
Hi Laurie
Thank you so much for your response. I am sorry to hear your struggle, but glad to hear you are doing a lot better. I did start to keep a food diary and I was pretty much diocumenting everyday that I was having an upset still. I think maybe I should pick it back up again. I know I don't get on well with apples, tomatoes and cucumber - for what ever reasons! I am a vegetarian aswel, bordering o nvegan, so I am finding it a truggle as a lot of my diet was based around pasta. But I cook from scratch every night and I eat a lot better than I ever did.
Thank you for the reassurance. I am having regular blood tests to check all my iron levels are ok, and liver function etc. I just need to work on the health anxiety side, and hopefully that will come with time. I will try to be positive that I will feel 'normal' once again!
Thank you
Abi
TB1977 laurie99463
Posted
pls I have a question. I have been diagnosed with coeliac (marsh 3) in May 2017. Since then I have been on gluten free diet but my condition is not getting better and I am having now sinus bradycardia with sinus arrhythmia. Mornings are really bad with very strong dizziness, chest discomfort/tightens, burping, shivers and occasionally very frequent diarrhoea. The heart bother me the most. Any suggestions, please?
thank you.
FA54321 AT30
Posted
Yes, sometimes you get worse before you get better. It is still quite early days, if you've had coeliac disease a long time before it was diagnosed, it is going to take a while to get back on track and get your body to it's optimum fitness.
With regard to your rashes etc., it's possible that some of the foods you are eating now you are gluten free, may contain additives which you were not eating before. For example, there's a lot of xanthan gum in gluten free foods and also E464 (hydroxypropl methyl cellulose), which are usually found in gluten free bread, but also other bakery items etc., these are just 2 examples, and you may be sensitive to them. I have found I cannot tolerate either of these, although, since giving them up, have been able to introduce them back into my diet in very small doses. Please bear in mind coeliac disease is an auto-immune disorder, and your immune system may still be under attack. (Have you checked and double checked all the foods you are eating, to be sure gluten hasn't accidentally got into your diet? Keeping a food diary is a good way of checking back, not only for coeliacs, but for any other intolerances or reactions to the food you are eating. (I have become intolerant to fructose, soya, onions, beans etc., and became intolerant to dairy products before being diagnosed with Coeliac disease, as well as other things.
If you need any further help I suggest you contact Coeliac UK, they may be able to help you with things you haven't thought about in this minefield of gluten.
AT30 FA54321
Posted
Hi Fiona
Thank you for your feedback - it is reassuring to hear that others have been through the same thing, and there is hope that I will feel a lot better.
I have double checked all foods i'm eating are ot containing hidden gluten. I am very careful - but I do wonder if perhaps I could be getting CC from home, as my other half still has gluten now and again. I have cut down on dairy producst - I never really ate much anyway - but I am concerned about soya as that is an alternative for me being a vegetarian (bordering on vegan now) to get essential vitamins and calcium.
I have joined coeliac UK and am hoping to get a local group set up in my area as this currently isn't available and I feel I personally would benefit from so much. Sometimes it is more about knowing you are not alone, and this can help you to feel more positive.
Thanks
Abi
FA54321 AT30
Posted
Hi Abi,
My other half also eats gluten; make sure you wipe all surfaces down twice before preparing food. I changed our cooking hob from gas to induction hob, as there were less places for gluten to get hidden in on the hob, I also have a small cordless vacuum cleaner which I use solely for vacuuming the surface where my partner prepares sandwiches, breakfast and his toaster etc., so there is very little chance of gluten getting into my meals, particles of gluten can be airborne so it's important you don't leave food out uncovered near gluten. Another way cross contamination is possible, is through wooden spoons, plastic cutting boards etc., so make sure you have separate ones for yourself. An alternative to soya milk is almond or rice, but rice milk isn't any good for cooking sauces.
Another thing I check is for gluten in cosmetics (especially lipstick/lip balm) and shampoos etc. It was something that was suggested to me on a forum in the USA, they always seem to be one step ahead of us here, and for all Coeliac UK haven't recommended this, there is evidence to suggest you can get contamination from things like lipstick/lip balm as we ingest it each time we eat, drink, lick our lips etc., so whilst this isn't set in stone, it's certainly worth thinking about.
Best wishes,
Fiona
lynda01728 AT30
Posted
Hi Abi,
I'm almost 3 years on from diagnosis and it has been a long journey.
I did feel very much better immediately after going gluten free but many symptoms still lingered. After about 15 months I decided to follow the advice of my dietician and try the FODMAP diet, This is very restrictive initially but it helped me see exactly what my gut could and couldn't cope with. Gradually I am gaining strength and now feel healthier than I can ever remember feeling before.
Unfortunately gluten is usually only part of the picture.....the main part but still only part. Gluten has usually wrecked your gut to such an extent that it has difficulty coping with many other foods. The result of this is a myriad of symptoms.
Try FODMAPs ....it really is worth the effort.
Good luck and best wishes
Lyn
AT30 lynda01728
Posted
Hi Lyn - congrats on the 3 years GF! And thank you for your response. As with you, I feel immediately better in that i have energy, and I am not falling asleep at my computer everyday (due to anemia) this is the biggest improvement for me. But all the other little ailments that seems to be surfacing are disheartening and make me question if I am doing something wrong, if it is part of the process, or linked to something else entirely. I think because I had clearly been unwell for a long time, it will take me a while to feel like a 'normal' person again.
I have heard of FODMAP and will have a look at this, it just concerns me as mentione din my previosu post, being a vegetarian/bordering on vegan I really don't want to restric myself any further.
Thank you so much.
Abi