I think I may be Celiac

[Georgiajafa]

Hello,

Apologies in advance for the long story that I’m about to share. I’m hoping for your thoughts and advice about celiac diagnosis. 
 

When I was 18 I moved out of home, started uni and had a lot of changes and stress and at that time I developed a gluten intolerance. When I would eat gluten I would get all the normal symptoms like bloated, diarrhoea, etc but the main ones that were awful for me was 1) really bad rashes on my eyes and swollen eyes (one time I woke up and my boyfriend at the time thought I’d been punched in the face the night before because my eye was swollen shut!) and 2) extremely sore, itchy, cracked nipples that would often bleed. This would happen immediately after eating gluten everytime. Of course once I realised this I stopped eating gluten and these symptoms went away! I then learnt about celiac disease but learned that you need to eat gluten for 6-8 weeks to get tested. This was not an option for me so I never got tested but at the time I assumed I had celiac. I remained gluten free for 5 years. 
 

After 5 years I had a lifestyle change and my stress levels were decreased a lot. I’m not sure why I originally started eating gluten again but I somehow realised that I seemed to tolerate it again and so I figured that I mustn’t have ever actually been celiac because I thought if I was celiac I wouldn’t be able to tolerate gluten ever again so I started eating gluten again and I have not had any of those symptoms I used to have and have been eating gluten for about 6-7 years now. 
 

My mum has recently discovered that she is most likely celiac. We always thought she had fibromyalgia and she’s been sick pretty much my whole life but cut out gluten and her symptoms went away after 30 years of being sick. She hasn’t been able to test as she can’t handle eating gluten again for 6 weeks before the test so she is assuming she has celiac. She recently told me that she thinks I am celiac because apparently you can go through periods in your life where you might not have symptoms. Does anyone know about this? Is that correct? My mum had 4 miscarriages before being able to have her first child. We have just learned that this is common for celiacs. 
 

I have been wanting to have a baby for a long time and my husband is finally ready to start trying so we were about to start trying when we get back from our holiday at the start of June 2024. I was so excited to start trying but now I’m thinking maybe I need to wait and get tested for celiac first. The thing is I don’t think I eat enough gluten for the test so I think I would need to increase to the recommended amount for 6-8 weeks. My husband doesn’t think I need to test. I think he thinks I’m being a hypochondriac and thinks obviously I don’t have celiac as I don’t have any gut issues anymore or any rashes. He thinks we should just try and if there are problems like miscarriages then we test for celiac. But obviously I would much rather not have to experience a miscarriage if I don’t have to!!! 
 

Some other things to note: I have always been prone to mouth ulcers my whole life.  Get pretty bad ones under my tongue. I get blood test regularly and I don’t think I’ve ever in my life had an iron test come back not low. I don’t have anaemia but just low iron always. I had anaemia as a child.  A few years ago I had severe zinc deficiency for no apparent reason. I eat all the foods that contain zinc regularly. I now take zinc supps but still am in the low side of normal even years later. I have to nap everyday. And if I don’t set an alarm the nap would go on for 2-3 hours and this is on top of 9-12 hours sleep at night. I have always had anxiety from my earliest memories and depression since I was 12. I have been on antidepressants for the last 10 years. I have warts on my feet that are resistant to treatment. I’ve never seen warts as a symptom of celiac but I started thinking about it and the treatments for warts are supposed to kick start your immune system to fight the virus off. I was thinking maybe if I have celiac and am eating gluten maybe my immune system isn’t able to fight off the virus?  
 

Anyway, if you have read this far thank you. I would like to hear your thoughts. I feel like I should probably get tested before trying for a baby but I just hate to put off trying 😭 our holiday this month is in Japan so I won’t be eating a lot of gluten there and I think I would need to properly eat the recommended amount starting when we get back for 8 weeks and then get tested which would mean 3+ months from now before we could start trying. And if I’m not celiac then it could be for nothing. Please let me know if you think I may have celiac or if you think the fact that I have not had any gut issues or rashes for the last 6+ years indicates I do not have celiac. 
 

thank you! 

[trents]

Welcome to the forum community, @Georgiajafa!

Yes, we do have anecdotal reports on the forum of those with celiac disease who seem to go into remission for a period of time. My observation is that most of these cases are with people who are originally diagnosed as youths. 

I cannot tell you anything you don't already know so I will not offer an opinion about whether or not you have celiac disease. There are certainly some indicators that you could, such as the chronic nutritional deficiencies you mention, GI distress earlier in life, chronic fatigue and possibly the rash. As far as remission, sometimes when we enter the prime of life years are constitution is so strong the symptoms become masked for a period of time.

Of course, the wisest course of action for getting accurate celiac disease testing would be to do the gluten challenge before getting tested. 10  grams of gluten daily (about 5 slices of bread) for three weeks or more.

If you are unwilling to do the gluten challenge and since you are still consuming some gluten and having some symptoms, the next best step would be to get a full celiac panel which would include:

1. total IGA

2. tTG-IGA

3. DGP-IGA

4. DGP-IGG

The last one, DGP-IGG can be helpful for those who have already started a gluten free diet or who are eating low amounts of gluten or are IGA deficient.

I would also recommend you look into getting genetically tested to see if you have any of the genes known to be associated with the development of celiac disease. This is not for the purpose of diagnosis but for ruling out celiac disease since 40% of the population have one or more of the genes.

[Georgiajafa]

Thanks Trents, I’ll go ahead and do the gluten challenge and see what happens