Am I a candidate for Immune Testing (Celiac Disease and maybe Endo)?

[Patuzy]

Good Morning, I'm brand spankin' new, so please be patient with me if I don't do this right. :-)

I've been through a handful of Clomid/IUI cycles, and 1 IUI/Injectible cycle with no BFPs. TTC about 1 1/2 years.

I wondered if I might be a candidate for Immune testing? I believe I have endo (due to my symptoms-I haven't had a lap yet) and I have Celiac Disease (an autoimmune disease). I've heard other autoimmune disease that were linked, but I've heard no mention of Celiac Disease.

Also, I've heard people mention flu-like symptoms following IUI/Egg Transfer. . .with my IUIs I usually have pretty bad AF type cramps. Could this be an issue? Practically, in my brain, it doesn't seem very healthy to have your body act so strongly to insemination. . .

Thank you so much, and thanks for being patient with me.

Patuzy

[lambchops]

Celiac--that's what my brother-in-law has. You may want to explain to folks what it is.

Secondly, don't worry about your AF type cramps. These are also very normal. I never had any flu-like symptoms with my IUIs only cramping. My body is very unhappy when anything happens to my uterus. Any kind of jostling makes it tie into knots.

Do you have a reproductive endocrinologist, or do you see an OB-GYN still? If you're still at an OB-GYN you may definitely want to consider a RE. I'm not sure I'd get immune testing yet but I would definitely exploreother options and make sure you have all the required "normal" tests like HSG, TSH (thyroid), etc...

[Patuzy]

Thanks, Lambchops.

Keep in mind, I'm not an expert. Celiac Disease is an under-diagnosed auto-immune disease. Its sometimes referred to as Gluten Intolerance. The symptoms vary, but basically with someone with Celiac Disease, the body thinks gluten (wheat, barley, rye, and (sometimes oats)) are toxic and causes damage to the small intestine and can cause all kinds of other problems if you don't eliminate gluten from your diet completely. Untreated Celiac Disease can cause miscarriage. While there are many symptoms, the classic symptoms are diarrhea and weight loss (there are others I'm forgetting). Celiac Disease is very complex, please don't take my words as hard fact, I am not an expert, but I have been living with it for awhile, so I do know a little bit.;-) Please see the link below.
http://www.celiac.com/index.html

Lambchops, thanks for your thoughts on the AF-type cramps. I won't worry about it then. ;-)

I have done 3 cycles now with an RE and had all the basic testing done HSG/Blood levels/SA for dh. All tests are normal.

Patuzy

[Tabithalyn]

Patuzy....
Auto-immune conditions can be linked... I initially thought I had some sort of celiac disease... I still choke up when eating pasta and straight breads but love them anyway!

the truth is if you haven't had comprehensive testing done that may be an insight into more auto-immune stuff that could be preventing you from conceiving.

The other truth is that if what you're doing isn't working then there may be much better advantage to getting to an immune friendly doctor who will work with you and prescribe the meds that actually suppress over-reactive immune functioning and you may achieve a prg. in record time that way....

I'm hopeful that you are at least investigating this area of treatment as a possible way to help you conceive.

AF type cramping can mean so many things... it can also be indicating though that you are actually conceiving with the IUI's but that you are having implantation failure when you don't get a positive result or AF shows up on time. There is a way to test for this by getting bloodwork done earlier than the anticipated AF arrival (say CD 26 of a CD28 cycle) -quantitative beta hcG let me know that I was conceiving but losing prgs. right away.
This led me to investigate immune issues and immune meds took me into motherhood with my DS.

Please ask away for more info. here ok?
Regards and best of luck, Ally

[Lauren2005]

Yes.

That is, please DO pursue immune testing and treatment. I just responded to you on the endo board. Please also join the following group: http://health.groups.yahoo.com/group/immunologysupport and post this same question. All you need to do to join is to get a free Yahoo e-mail account. You will soon realize that, while your situation may seem strange/unique at this time, you are actually in good company. I also recommend becoming a patient of Dr. Alan Beer who, although he is located in California, has never met most of his patients in person. He receives their test results, then consults with them by phone and works with their local doctor. He's an RI (reproductive immunologist) not an RE (reproductive endocrinologist) so he doesn't substitute for your regular doctor... Anyway, he's at http://www.repro-med.net , which is not the world's greatest web site. The best thing is the interview available for download on the left side of the home page.

Best wishes to you!
Lauren

[Patuzy]

Hi Ally-So glad to hear you don't have Celiac. The diet is miserable, lol. I'm starting to look into the immune testing, but still a bit hesitant. Are imm. treatments always accompanied by RE treatments, or are people able to conceive naturally (well, semi-naturally)? The post IUI cramping is always immediately following the IUI, so I don't know if it would be implantation. Anyway, thanks for the warm welcome, its appreciated! GL w/ ttc #2!!

Lauren-I think I've posted my question on the board you mentioned. I don't see it yet, so maybe I'm waiting to be approved. I responded to your post on the endo board too. I appreciate your help. By the way, I don't know if this is appropriate to ask or if I'm being nosey, but how did you latest treatment go? I was lurking for a bit and saw that you had your first treatment round after the immune support.

Thanks again, Ladies!!! :-)

Patuzy

[Lauren2005]

Hi Patuzy!

I responded to your Yahoo posting earlier this morning.

Don't worry... basically everyone is hesitant initially about immune testing and treatment. In fact, Dr. Beer's average patient is 38.8 years old, with 4 m/c's and/or 4 IVF failures. His 70+% success rate is outstanding, especially if you consider who he's trying to help... A lot of his patients are in a state of desperation due to their own harrowing tales up to that point. It's relatively rare (but I think becoming more common due to boards like this one) for women to seek him out prior to significant suffering on their own part. There is also a lot of skepticism within the RE community about RI's in general. That's unfortunate on so many levels.

Typically, once treated, immune patients are actually encouraged to ttc naturally rather than using stims. They might do a natural IUI if they have sperm antibodies (which the IUI gets around.) Some patients (like me) are facing other things like aggressive endometriosis and are thus advised to proceed to IVF.

I don't mind at all that you've asked about how things are going on my end! Thanks for asking. We had a very successful LIT and decided (against Dr. Beer's advice) to try naturally for one month. We knew that the odds were rediculously low, but it was a wonderful experience for us as a couple to have a month without doctors and procedures, in the privacy of our own room, trying to conceive our baby. Even though it was unsurprisingly a BFN, it was very symbolic and special for us. So, we're now in our first IVF cycle. I just started Lupron yesterday, and start stims on 12/9. Estimated ER/ET is the week of 12/18. Hooray! My protocol is Lovenox (for my clotting issues), baby aspirin and Folgard (for my MTHFR -- this is every day for life), IVIg for elevated NK cell activity. We're optimistic, but we also know that there is more within the field of RI that we can try if this doesn't work. Dr. Beer's protocol makes a lot of sense with everything I've researched on reproductive immunology. There is a bit more testing and some meds if we're not successful, but hopefully this first try will work!

Hope that's helpful. Best wishes to you!!!