First symptoms

[Itchyislander]

Hi all,

I'm curious as to what everyone's first symptoms were? The symptoms that promoted you to visit the Dr? I have a colonoscopy and gastroscopy next week to investigate low iron, low b12 and various stomach/bowel issues. I had a blood test for Coeliac, but this takes 4 weeks to come back from the lab and from what I have read may indicate a false negative?

[Gym19]

Hey, mine was Diarrhea 3x a day, headaches, deep bags under my eyes, pale, bloating, constipation, feeling tired all the time. So tired I would just fall asleep at my desk. I started taking caffeine tablets from the pharmacy to try and get through the day. I went to the GP many times over about 10yrs. My diagnoses included “IBS, being a teenager, needing a new job and having a caffeine addiction”. Lo and behold, it was none of the above. A GP at my work suggested it and I was finally diagnosed Coeliac at 23. Best thing that’s ever happened to me. I was told it could take months to be normal again but I felt normal again within 2 days. So grateful I listened to my body and kept pushing for a proper answer. I wish you all the best and hope you get to feel better soon.

[Gym19]

I also had a colonoscopy which was thankfully normal but it wasn’t a pleasant experience and it made me angry that they put me through that when they could have done a simple blood test first!

[Munchkinfeet]

Hi, I have been waiting 3 weeks for my bloods to come back, I have also been told 3-4 weeks (why???) so may have another week to wait. I have an urgent referral to gastroenterology after calprotectin was raised in my stool. That also took 3 weeks. I had slightly low calcium in my bloods, that test was repeated and it fell within normal the 2nd time.

I've been off my food for months, like a serious aversion to anything, never feel hungry. Have a lot of left sided abdo pain that has hospitalised me 3 times which they have tried to blame on my kidney ( I have stones). CT has shown my stones are not moving. I was also investigated for ovarian cancer, as a lot of the symptoms are similar, all bloods and ultrasounds were clear.

I have nausea, cramps, bloating, noisy/gurgling guts, loose stools and diarrhoea every day, extreme tiredness and I get numbness and tingling in my toes. I have lost nearly a stone in the past month due to diarrhoea and not eating.

I never knew anything about coeliac until the gp mentioned it.

What are your symptoms, itchyislander?

[Itchyislander]

Thanks for the replies. I have constipation, difficulty going and then taking several goes to empty my bowel. I have b12 deficiency (may be worth getting that checked Munchkinfeet as it can cause the numbness) and iron deficiency. I am tired all the time, I have no energy for anything. My anxiety is really high too.

It is so frustrating waiting for tests. I was referred for the colonoscopy, I then had an appointment with a consultant last Tuesday, I then have to wait until friday to see the nurse to collect medication etc, and I still have no date for the actual tests.

I am just so fed up with having no energy- I am self employed and it is so hard to get my work completed.

[Munchkinfeet in reply to Itchyislander]

Have you had your bloods back? Mine came back yesterday as satisfactory

TTG Ab (IgA) 0.4 u/ml (0.0 - 7.0)

Given my raised calprotectin it looks like some sort of inflammatory thing that's going on

[FFNick]

Each of us has different symptoms to food. I self diagnosed in my 20s from a suggestion from my mother to eliminate certain foods. By not using NHS it has been impossible to get it on my record.

[nuigini]

I had loose stools for over 30 years. It didn't disturb me too much as after about three runs to the loo each morning it was all said and done. Up until last year doctors either didn't care, weren't concerned, or put it down to IBS. One I saw in August last year gave me a prescription for a multitude of Imodium tablets.

Over the last couple of years I started having to get up in the middle of the night for a bowel movement,. Also began feeling slightly nauseated before a BM, had occasional cramping and was noticing much more gas and bloating. I was also experiencing fatigue, often debilitating. Unfortunately, fatigue is a major symptom of another autoimmune disorder, polymyalgia rheumatica (PMR), which I've had for over 5 years.

I began seeing a new GP late last year and he immediately suggested the possibility of Celiac Disease. The diagnosis was confirmed through blood work. Apparently my results were so positive they were off the scale. All other blood indicators like B12, iron, bone density, etc. were fine.

Unfortunately, the wait time for an endoscopy to confirm the diagnosis is 2 1/2 years. Of course I went GF right away and will go back on gluten again six weeks before having a biopsy, if that ever gets scheduled.

I no longer have the gas, nausea and cramping, but still have the same routine in terms of numbers and times of trips to the bathroom. Things have firmed up a bit, but the Metamucil I began taking twice a day may be helping with that.

[CATRYNA49]

I had suffered for many years with anxiety, Bi-polar, CFS, IBS and Fibromyalgia. For decades I sought help, but no allopathic doctor was of any help. At 62 I finally found a Holistic doctor who had extensive blood work done and discovered multiple autoimmune issue; Hashimotos, Celiac and finally Dermatitis Herpetiformis. Changing my diet including going gluten free and then grain free helped tremendously. It was not until I added the ingestion of cannabis leaves and buds that I was able to cure my IBS.