Waiting tests for celiac disease

[Kay baird]

Hi I'm 53 amd as far back as I can remember even being a little girl I always had terrible trapped wind pains and diarrhoea sometimes constipation. I get terrible bowel spasms followed by urgency rapid bowel movement. In my 20s I had 2 unsuccessful colonoscopy terrible experiences as I took a bowel spasms during one and endoscope was unable to pass through. They said put it down to IBS. I have terrible pain and bubbling bloating and gassy daily. I've suffered kidney stones and gallstones. This year everything flared up really badly got gall bladder out. Still bad pain in right side abdomen got a pill cam test and colonoscopy and was told I have diverticular disease with flare ups of diverticulitis. Consultant called me to say due to my symptoms she wants to take a poo sample to check for inflammation and blood sample to check for celiac disease. I checked online and I have all the classic symtoms of celiac disease which I've never known anything about until my research now. I've lived with this my whole life and I'm worried due to my age it has done some damage being undiagnosed. I have osteoporosis diagnosed a good 10 years ago which is young for that. Not sure it's related or relevant but 4 years ago to the day I suffered severe anaphylactic shock to naproxen and was unresponsive. Now can't take NSAIDS and carry eoi pens. I await details of when I go for my celiac tests. Any advice would be great in diagnosis and diet etc I just want some relief I'm exhausted living this way and thank you this forum I didn't know where to go. Currently awake at back of 3 in morning with stomach ache nothing new! Take care x

[trents]

@Kay baird, welcome to the forum!

Yes, you do have several classic symptoms of celiac disease. The only advice about diet to give right now is not to attempt eating gluten free until all testing is done for celiac disease. Sounds like you are awaiting an appointment for serum antibody testing for celiac disease. That may be followed by scheduling an appointment for an endoscopy/biopsy to check for damage to the villi that line the small bowel, especially if the antibody testing is positive. Damage to the villi that line the small bowel is the hallmark of celiac disease and when unchecked results in a host of nutritional deficiency related diseases such as osteoporosis. The villi that line the small bowel are where the nutrition in our food (vitamins and minerals) is absorbed so when the villous lining is compromised, nutritional elements are not absorbed efficiently. If you start a gluten free diet ahead of the completion of all testing it allows for some healing of the villi and so will compromise the test.

For someone with celiac disease, consuming gluten triggers an autoimmune reaction that creates inflammation in the villous lining of the small bowel. Over time, this inflammation erodes the villi. The serum antibody tests are designed to detect this inflammation while the follow-up biopsy is designed to visually examine the damage under a microscope. In some countries, like the UK, if the antibody testing produces positive results 10x normal or greater, physicians will often forego the biopsy and assign a diagnosis of celiac disease from the antibody tests alone. Short of that, however, they will typically order the endoscopy with biopsy for confirmation as it is considered the gold standard diagnostic procedure.

Since celiac disease affects tissues in the small bowel, an endoscopy rather than a colonoscopy is used to check for the disease process.

Because of a lack of knowledge of celiac disease on the part of most physicians, it typically takes 10 years to get diagnosed. It just isn't on their radar and they are no aware of the large array of symptoms associated with celiac disease. Most only know about the classic GI symptoms. There is somewhat more awareness about celiac disease on the part of the medical community than there was a couple of decades ago but still there is a long way to go. The gluten sensitive/celiac disease community has learned we can't depend on the medical community to know enough to order the right tests or to give correct follow-up medical advice in living with celiac disease. We ago to appointments armed with knowledge and prepared to be appropriately assertive. We have to be our own advocates.

Edited December 13, 2022 by trents

[Scott Adams]

I would only add to what @trents has mentioned and say that even if your celiac blood test turns out negative you should still consider trying a gluten-free diet for several months. This is because around 10x more people have a condition called non-celiac gluten sensitivity, and unfortunately there currently aren't any tests for this. If a gluten-free diet were to relieve your symptoms, then you would likely have NCGS. 

Be sure to keep a food diary to see if you have other food intolerance issues, and casein/cow's milk is a common one as well.

[Kay baird]

13 hours ago, trents said:

@Kay baird, welcome to the forum!

Yes, you do have several classic symptoms of celiac disease. The only advice about diet to give right now is not to attempt eating gluten free until all testing is done for celiac disease. Sounds like you are awaiting an appointment for serum antibody testing for celiac disease. That may be followed by scheduling an appointment for an endoscopy/biopsy to check for damage to the villi that line the small bowel, especially if the antibody testing is positive. Damage to the villi that line the small bowel is the hallmark of celiac disease and when unchecked results in a host of nutritional deficiency related diseases such as osteoporosis. The villi that line the small bowel are where the nutrition in our food (vitamins and minerals) is absorbed so when the villous lining is compromised, nutritional elements are not absorbed efficiently. If you start a gluten free diet ahead of the completion of all testing it allows for some healing of the villi and so will compromise the test.

For someone with celiac disease, consuming gluten triggers an autoimmune reaction that creates inflammation in the villous lining of the small bowel. Over time, this inflammation erodes the villi. The serum antibody tests are designed to detect this inflammation while the follow-up biopsy is designed to visually examine the damage under a microscope. In some countries, like the UK, if the antibody testing produces positive results 10x normal or greater, physicians will often forego the biopsy and assign a diagnosis of celiac disease from the antibody tests alone. Short of that, however, they will typically order the endoscopy with biopsy for confirmation as it is considered the gold standard diagnostic procedure.

Since celiac disease affects tissues in the small bowel, an endoscopy rather than a colonoscopy is used to check for the disease process.

Because of a lack of knowledge of celiac disease on the part of most physicians, it typically takes 10 years to get diagnosed. It just isn't on their radar and they are no aware of the large array of symptoms associated with celiac disease. Most only know about the classic GI symptoms. There is somewhat more awareness about celiac disease on the part of the medical community than there was a couple of decades ago but still there is a long way to go. The gluten sensitive/celiac disease community has learned we can't depend on the medical community to know enough to order the right tests or to give correct follow-up medical advice in living with celiac disease. We ago to appointments armed with knowledge and prepared to be appropriately assertive. We have to be our own advocates.

Thank you for this invaluable information and advice I will take this on board and be sure to refer to this when next speaking with my consultant I appreciate you taking the time to inform me thank you x

[Kay baird]

14 minutes ago, Scott Adams said:

I would only add to what @trents has mentioned and say that even if your celiac blood test turns out negative you should still consider trying a gluten-free diet for several months. This is because around 10x more people have a condition called non-celiac gluten sensitivity, and unfortunately there currently aren't any tests for this. If a gluten-free diet were to relieve your symptoms, then you would likely have NCGS. 

Be sure to keep a food diary to see if you have other food intolerance issues, and casein/cow's milk is a common one as well.

Thank you for this added advice Scott I am definitely going to try a gluten free diet once I have completed my tests even if they are negative as you advise I need to find some relief from these symptoms there is something wrong if it's not celiac disease oh well fingers crossed I get some sort of diagnosis so I can try manage it 🤞🤞