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[Alicja]

Hi, I'm looking for some advice. I'm 28 and I was diagnosed with coeliac disease, when I was just 18 months old. Doctors told my mum that I had too many antibiotics in short period of time and now I can't digest gluten. I have been gluten free for a year. After a year of gluten free diet, the doctor repeated the biopsy and told my mum that I was healthy and could go back to normal. 

So I have been eating gluten for the last 26 years. 

I do have health problems like tummy aches from time to time (after giving birth two years ago the pains started to be not manageable). I am constantly bloated. At 13 years old I was diagnosed with arthritis in my knees. 

At 15 years old I had another biopsy to check my intestinal villus. Biopsy looked good. And doctors were still sure that I can eat gluten. 

Then at 18 years old I was diagnosed with FAI – FEMORAL ACETABULAR IMPINGEMENT. That makes my life hard, as some days I can't walk at all, because I'm so much in pain in my hips. I was living in Poland back then, so GP doesn't have any history of that. I moved to UK when I was 20. 
I have also skin condition called Keratosis pilaris. Also very dry and flaky skin on my palms, feet, knees, which cracks, bleeds and hurts. 

My mum and my brother both have hypothyroidism and Hashimoto. My blood results regarding this are all OK. My mum never been tested for coeliac, but she has similar symptoms to me including joint and bones problems, dry and flaky skin, atopic dermatitis, tummy aches and bloating, constipations and that Hashimoto. 

Recently I found out that coeliac disease can't be cured. And I should be on a diet all my life. How is that possible that doctors told my mum I was cured? 

If I am still ill, why the biopsy at 15 years old didn't show the disease? 

Any thoughts about my story? 

Also I have booked an appointment with GP, so I will be chatting with a doctor about it soon. How do I approach that? Shall I suggest blood tests first? What if the blood results are all good? 

Thank you for reading and sorry for such a long post.

[trents]

First of all, I'll address your question about how could the doctor diagnose you with celiac disease and then tell your mother you could go back to eating normal after your biopsy was clear as a 21/2 year old. That he told her this comes as no shock to any of us veteran celiacs. We are well aware of the blatant ignorance of the medical community as a whole with regard to celiac disease. This is especially true of older practicians whose knowledge of celiac disease, however limited it was, is outdated. Much has been learned bout celiac disease in the last 30 years but older physicians have not been exposed to it by and large. It's been a long time since they were in medical school.

Concerning how you should approach your physician at the appointment, you should ask for a blood test first. Ask for a full celiac panel and not just the tTG-IGA antibody test that many will order. Print this out and take it with you: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/. Give a copy to the doc. Go prepared to know what you want and why. The tTG-IGA is the centerpiece of the panel but for various reasons some people with celiac disease have atypical antibody responses that cause the tTG-IGA to be negative but other tests in the full panel will detect. In the UK, if your tTG-IGA values are 10x higher than normal then many docs will forego the endoscopy/biopsy and declare you to be a celiac.

Edited November 23, 2021 by trents

[Scott Adams]

I agree with @trents and your initial diagnosis, if correct, really meant that you should have been gluten-free for life. At this point the important thing is to keep eating gluten daily until all of your testing is finished, because going gluten-free before any tests may make the results false-negative.

[CeliacMiViejoAmigo]

Hi! So I'm in a similar boat, 29 and after suspecting for many years that I had Celiac I did a biopsy and came up negative JUST on the biopsy. My doctor told me that based on my positive blood work and other symptoms he had no doubt that I had Celiac, even with a negative biopsy. So from my experience a biopsy is not necessarily going to be a 100% chance you have the disease. It gets even more complicated if you have been on a gluten-free diet, trust me. There is also something called Latent Celiac Disease which might interest you. 

https://www.verywellhealth.com/what-is-latent-celiac-disease-562742

 

As a mother of three kids that inherited the disease, I would implore you to consider making sure your kids are gluten free. Especially if you have other relatives that have similar symptoms. A simple blood test is often not sufficient due to underdeveloped immune systems, and the thought of doing a biopsy on a toddler is in the least of the word painful. 

My oldest son suffered for years before we figured out what was going on, a gluten challenge in order to try and get a diagnosis on my daughter caused anemia so bad that she was eating the paint off her bed and own hair. My two year old has been exposed to play-doh one time in the nursery and had Diarrhea for a week in addition to Dermatitis Herpetiformis that took a month to go away. 

The symptoms of Celiac Disease are incredibly varied, if your kids are not yet gluten-free you may have a chance to save them of the kind of lifelong pain you have experienced.  I pray every day that I have with my kids. 

 

Good luck and God Bless!