Some icky in this - new here advice about test

TheLittleFangs

Hi I am Lucy.

the moment I am having tests done at dr but found out not the celiac tests. I am 31 and have been having issues for years I went gf for a few years as dr said I had ibs and it was a problem. All the issues now are the same as then. Heres my symptoms:
Diarea or constipation (often broken by violent upset stomach)
Nausea
Abdominal pain (all fours on the floor pain)
Sensitive skin
Mouth ulcers

Also have had recurrent miscarriages. I also have severe depression. Sometimes get a burning crawling sensation in my legs.

stools often white/grey (this is new to this bout of issues it freaked me the hell out). Sometimes blood. My periods have stopped.

The dr is testing for the 'worst scenario' with bleeding but I want to ask for celiac test as I am lactose whatever it is...I kinda can't have it either and gluten kicks off all of the above. I have gone gf again as am not a madwoman and want to get well....but the internet celiac uk say not to go gf until positive blood test and biopsy? Is this true? Do I have to endure weeks of pain?

Thank you xx

blupanda12

My husband was diagnosed with Celiac's disease, and yes, unfortunately you will have to be eating gluten in order for the test to be accurate. Note, I'm not a doctor - the following is based on my research into Celiac when my husband was diagnosed.

Celiac is basically an autoimmune reaction to gluten - your body creates antibodies when it encounters gluten, and the immune system damages the small intestine over time. Most of the tests look for this damage in order to diagnose Celiac.

There are varying estimates of how long you have to be eating gluten in order to avoid a false negative, and also varying estimates of how much gluten you have to be eating. The general recommendation that I've seen here in the USA is to be eating gluten for at least 6 weeks, in amounts normally present in an average diet. This means eating pasta, bread, etc. regularly.

Obviously, it sucks to have to eat more of something that makes you feel like crap, but it is unfortunately necessary for a proper Celiac diagnosis. I have read of others who decided the diagnosis was unnecessary and now they just eat gluten-free.

I will say that from what I've read, the most common symptoms of Celiac are GI-related, so trust your doctor in that there may be other issues occurring to cause all the symptoms you list above. Long-term undiagnosed Celiacs (i.e. people still eating gluten who should not be for 10+ years) can have issues related to malnutrition too, due to the damage of the small intestine.

Trust your doctor, or find one you do trust, and good luck! Hope you find the answers you need to solve your health issues. :awesome:

TheLittleFangs

Thank you very much for the advice. I am sorry to read your husband went through all of this and I hope that now he is in recovery he is feeling much better. I will have a chat with the doctor after my exam appt which came through today. I am leaning to the 'diagnosis not neccessary' as I think it is crazy to eat something you know makes you sick. If I can't use a washing powder I don't keep using it just to make sure. My biggest concern will be nutrition as milk also causes issues and annoyingly 'some' soy so I will have to see a nutritionist. Thanks again. All the best x

canadjineh

Your other related issues with dairy & soy are not uncommon for celiacs, there are several on this forum who are going through the same issues. You could do a search or roll through the GF threads to find specifics about dairy & soy free menus and assistance or at least a bit of empathy. I know I decided not to do the gluten challenge test as I had already been GF under doctor's suggestion for a few years. It may make a difference to you though if you need the DX (diagnosis) for insurance coverage of special foods or other medical help. Hugs and best wishes.

Mof3wc

Did the doctor do a colonoscopy?

I'd push for one, the bleeding is not a usual sign of IBS, but it is of IBD (Crohn's and ulcerative Colitis) The mouth ulcers, pain and diarrhea, and everything else are too. Not trying to scare you, it's just better to check everything, just in case. I chose not to check and ended up with a perforated bowel a few weeks after being diagnosed with Crohn's in the ER. It could have been avoided.

Flab2fitfi

I would go back and ask for the test. Undiagnoised coeliacs disease can cause miscarriages - know quite a few people who have had fertility issues and then got diagnosed and go on to have unassisated pregnanacies. Mouth ulcers for me is a clear indicator that I have eaten gluten - and normally happen a few days afterwards (alongside with tonsilittis). I was one of those who suffred with non GI problems first and then clicked with GP that it was coeliac disease that the docs had thought I had grown out off ( yep they used to believe that).