Should I have the endoscopy and biopsy?

[Alison2256]

Hi, all. I am new to this forum.

It's a weird and whacky road I have been on, yet after my thyroid meds did not seem to be working, I was referred to an endocrinologist. He did a myriad of tests, one which included the serum test for celiac disease. My results were IGg=35 and IGa= 33. I'm told that anything over 20 is a positive? Is it wise to go ahead and get the biopsy? I have had intense osteoarthritis since my 20's and have degenerative disc disease in my lumbar and cervical spines. Plus one total knee replacement and the other one needs to be as well. I am also anemic, but not due to iron or B12 deficiency. I have had a 24/7 headache since July of 2014, and have had constipation, fatigue and general 'blah' feeling as wekk. I have recently put on a lot of weight (despite not changing my diet), which has just added to how awful I feel in general. I thought a lot of that could be due to menopause, but it appears that gluten could be a culprit. I am just not sure what to do, for I don't have the "classic" symptoms for celiac disease.

Anyone have any thoughts about the biopsy procedure in my case?

Thank you so much for your help.

[Regalbirdy]

Hi Alison,

Have it done in my opinion. You need to know what's going on. It's not the nicest procedure in the world, but at the moment it is still the gold standard for a definitive undisputable Coeliac diagnosis.

It's much simpler in the long run to have it now, before any decision to go gluten free is made. Trying to do it after a period of being gluten free is often much more challenging. If biopsies show no gut damage, then that is a good thing - right?

Best of luck with your decision.

[greenbexy]

I would definitely go through with it, unpleasant as it is! I had cameras and biopsies both ends a few weeks ago. Looking for coeliac because of low iron, vitamin B12, folate and vitamin D deficient. Nothing found where coeliac concerned but tubular adenoma found so I have to have one every three years now.

I always feel it's better the devil you know, so to speak. To know what is going on 'in there' is better than worrying about it and it will give the doctor better picture. Even though the procedure is invasive, it doesn't take long and isn't too painful.

Good luck whatever you decide. (-:

[m0ezp]

Yes, have it done. An endoscopy isn't fun but not as bad as you'll imagine if you can get some sedation. There's no such thing as a weak positive from the blood tests - its like a weak pregnancy. The blood tests do throw up false positives but much less than false negatives so you probably do have coeliac. You need to get an 'official' diagnosis though because that's your route to getting more professional tests if necessary such as DEXA for bone density.

I have totally different symptoms to my youngest daughter, her only symptom was a bad headache for years. After years on beta-blockers and antidepressants (crazy but true!), when she stopped gluten her headaches stopped.

I was probably coeliac for about 12 years before diagnosis. My main symptoms were bloat and lethargy - due to persistent anaemia. I've had to visit the dentist every month of the last year - due to low bone density and anaemia.

Good luck

[Ellie68]

I've had many biopsies over the years and it confirms the disease. Your GP can confirm it from a blood test niw tho too

[jill55]

I was diagnosed with coeliac disease the silent type in December last year. I went gluten free straight away. The difference in my health has been staggering. When I saw a gastro Dr in March he wanted me to have a biopsy which would mean having to eat gluten again. I absolutely refused. Why would I want to reintroduce a food that was poisoning me? My GP backed up my decision. Gluten has caused me ataxia, chronic depression ,menstrual problems ,urinary problems and chronic pain. All gone apart from the ataxia, in weeks after removing gluten from my diet. Read the book by Alessio Fasano or watch his YouTube and Prof Marios of Sheffield hospital. Prof Marios is an acknowledged expert in coeliac ataxia. Only you can make the decision but there are much more reliable blood tests now.

[Alison2256]

Thank you all for such thoughtful replies. I will get the biopsy. Hopefully our insurance will approve the procedure. Health care in the States is a mess. Both my husband and I have bad backs, so we need more than most... yet we are some of the lucky ones to even have insurance through his job. If I do have celiac and experience a reprieve of symptoms after going gluten free... I can easily say that might save my life. I have been so depressed after feeling so crappy for so long. Thanks again for your help!