9 replies to this topic

[eyedoc]

I may be getting ahead of myself but I recently got tested for celiac disease and got a call that I need to see my doctor. So, at the very least my results were not normal. I don't have any symptoms but my dad has it and I wanted to get tested before going any further in our fertility treatments.

Now, I'm assuming, when I see my doctor on Friday he is going to tell me it was positive. Does anyone on here know how long it is recommended to wait before starting IVF and being diagnosed with celiac?? Thanks!!

[luna123]

I can't see any correlation. If your doctor says "you have Celiac", you would start a gluten free diet and that's it. If anything, being on a GF diet as a Celiac may help with IVF. Your body will be able to absorb better nutrients in the absence of gluten. 

[eyedoc]

From what I have read, they will not start IVF with a recent celiac diagnosis as your body will still have inflammation present from the gluten. That can affect implantation and put you at a higher risk for miscarriage. The common number I have found was 6 months of being gluten free before starting IVF. Was just wondering if anyone had any personal experience with this. I see my RE next week anyways so obviously I will ask her about it. But just sucks not knowing what our game plan is now....

[rokgerl]

Although I do not have Celiac's Disease I looked into many causes of my recurrent miscarriages as we were going into our last ivf attempts.  I'm sure that someone who is actually afflicted with Celiac's will be able to answer you in greater depth but here is what I have gleaned from everything I have read and what my naturopath has told me.

 

Depending on how widespread the damage is from your intolerance, it is usually advised to better wait until inflammation is under control (through a gluten free diet).  The only way to truly confirm the diagnosis and to see the damage is to get a bowel biopsy.  The next step is to implement the g-free diet.  I'm sure your doctor can tell you more but I'm thinking that you might have to stay on gluten for a while until you get the diagnosis (because if you go off gluten and you DO have Celiacs the following tests could show negative results because you have eliminated the culprit).  If this is the case, I personally would not start IVF.  Because the bowels are so close to the reproductive system, the inflammation could potentially cause difficulties with inflammation other places in the body.  Since Celiac's is an autoimmune disease, it could definitely impact pregnancy (or increase pregnancy loss).

 

I don't want to sound alarmist but I am always in the mindset to get the problem fixed before attempting anything.  You will spend a lot of money on IVF and if a loss or failed IVF can be mitigated by getting Celiac's under control then you will be better off for it.  I know you probably want to bite the bullet and get things on the go (especially when we try for so long without results and then come to the cusp of getting treatment), but a few more months could mean all the difference.  Pregnancy loss is hard.  So are failed IVF's.

 

I went on a dairy free, gluten free diet prior to starting our last ivf as suggested by my natuopath.  It was difficult at the beginning but it got easier as I went on.  (Edited: I didn't do it for 6 months...it just felt that way...I did it for 3!  ha ha!).

 

Good luck!

[eyedoc]

Rokgerl,
Thanks for your reply! I agree with you - definitely want to wait until things are under control with the whole gluten thing before starting IVF. I obviously want my body to be in the best shape possible prior to any IVF. I will do what the doctor suggests and if we have to wait another 6 months before starting IVF, then so be it. Aren't we all so used to waiting around anyways?? Haha. It just is a set back as we were just in the waiting period after DH had his varicocele embolization. Looks like we may now be in limbo a little longer...

[rokgerl]

I think it is very smart of you to have done testing before even starting IVF, especially when it runs in your family!!  Very smart.  I find that (my) doctors didn't even give it a second thought to do testing, even though there is a lot of information out there that links Celiac's with repeat pregnancy loss (and it's as simple as getting blood work...although blood work can show up as a negative when in fact you can have it).  When I had got to miscarriage #3 I insisted that my family doctor run a full immune panel on me as the clinic I was going to didn't seem to think it was a big deal.  My results came back negative but I did g-free anyway.  I had to try anything and everything before I knew it was time to give up.

 

You're right, we are always waiting....everyone here are pro's in that area by now!  It totally sucks to always be in limbo, but hopefully things will get on track and you will be able to assess everything quickly.

 

Keep us posted with what your doctor has to say!

[eyedoc]

It is something I have been meaning to do after my dad was diagnosed. Just kind of forgot about it until we were made aware of our fertility issues. I think my husband is more upset about me having to go gluten free than I am. Haha.

[eyedoc]

I do in fact have a gluten intolerance. Both my GP and RE doubt that I have full blown celiac as some of my blood work for celiac was normal, but not all. Without doing a biopsy they are unable to confirm celiac or not, but it doesn't really matter as I definitely have an intolerance and the treatment is the same - no more gluten.
For a new diagnosis of celiac, my RE said that they definitely want that in control before going further into fertility treatments.
As for my case, we are just going to do Femara with follicle tracking for 2 months and then recheck my celiac blood work as hopefully those numbers will be going down. And then go to IUI...

[rokgerl]

Thanks for the update. I'm sorry to hear that your suspicions were true. But it is great that you found out now vs later. Like I said, depending on the extent of the damage, you may only need to change things for a few months to get improvement.

Did you also know that as a person who is afflicted with celiacs, you are eligible to claim your food as a medical expense (since f-free food is so expensive and it is a requirement for those with celiacs). Anyway, I know you need to provide a note with your claim from a doctor stating that you have specialized dietary needs. Something to check out with canada revenue online.

Anyway, I wish you luck in going g-free! Do you start right away or will they be doing any other tests that require you to continue with g-foods for a while?

[eyedoc]

Rokgerl,
Yes, I was a little surprised it came back positive as I have no symptoms. But yes, I am happy I found out now vs further into our treatments.

I knew you could claim food stuff for income tax. Just not sure exactly how you keep track; I think you need receipts and keep track of the difference between regular food vs gluten free. I am meeting with my accountant soon on an unrelated note, so I am going to ask him about all of that.

I did start going gluten free this weeks as I don't require anymore tests. Whether I am just gluten intolerant or full blown celiac, the treatment is the same. No more gluten! We have stocked up on lots of new food, so it is pretty easy do far. I was never much of a bread eater, so not missing too much yet!