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Recent Diagnosis And Trying To Conceive

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Hi there.

I was diagnosed with celiac disease (positive blood test and positive scope) in December at age 30. I have one child who is nearly 2 and a half. Although I haven't had the best GI function, I truly don't believe I developed celiac disease until after pregnancy. Since my diagnosis I have been adhering to a gluten free diet, but have accidentally consumed gluten (at resturaunts or friend's houses) maybe once a month. I try very hard, and have gone up to 8 weeks without symptoms. My symptoms have become noticably less severe, and I do think I'm slightly less sensitive now than when I was first diagnosed. I am planning to stop eating at resturaunts for a while, both in order to get pregnant and then when (if) I am pregnant to protect the fetus.


That said, I am trying to get pregnant again, so paying close attention to my cycles. They have been unpredictable/inconsistent for several months now (occasionally I have a normal one). Prior to my diagnosis they were clockwork, and I got pregnant with my daughter on the first try. My last cycle, for example, included 7 days of spotting before my period started. This month I've been using ovulation predictor sticks and charting some symptoms, and although I'm well past the mid-point of my cycle I don't seem to have ovulated.


I know that getting pregnant can take some time, and although it turns me into a crazy person I'm doing my best to accept that and do what i can. That said, given my diagnosis I'm wondering if its worth going to the doctor yet. I haven't been to my GP since I was first diagnosed last winter. I did go to my OB for an annual exam, and she checked my ovarian reserves at that time (given my pattern of spotting for several days/ having longer cycles than usual) and found them to be excellent.

I'm still pretty tired but often dismiss that symptom as I am a high-sleep needs person with a low-sleep needs toddler! My GI symptoms are generally pretty well resolved although after an instance of gluten they are off for nearly a week.


Sorry for the lengthy and detailed post. My big questions are:

-Should I go see my physician about TTC or wait longer. We've only been trying for two cycles, but the abnormal nature of those cycles is worrying me.

-I know I may not be fully healed yet, due in part to the continued accidental injestion of gluten. But I'd love some input from others with Celiac disease about how their cycles/TTC are impacted by gluten.


Thanks very much. This diagnosis has felt isolating to me, and adds a new level of scary/stress to the whole process of trying to have a baby.

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I think you need more time! Some of us take months or YEARS to heal. You want to be sure you are able to stick to the diet so that you are healthy enough to get pregnant, carry to full-term and take care of your children! I would recommend that you return to your GI and ask for a complete celiac panel to determine if you are being diet compliant. The results might give you an improved determination to avoid gluten. They may also rule out that celiac disease is not your current issue. It sounds like you are not diet compliant though and this is normal. The gluten-free diet has a huge learning curve!

Accidentally ingesting gluten can really set you back. By that I mean it triggers an autoimmune response that affects so many areas of your body and can last for a few days to months (beyond tummy issues). I would strongly suggest not eating out for a while unless it is a 100% gluten-free restaurant. It sounds like you are really not symptom free too!

I understand your desire to have another child, but are you honestly healthy enough to take on this challenge? I know that waiting say, for a year, sounds daunting, but you might be a lot happier and feel good.

I wish you well and with time, you are bound to get pregnant!

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Hashimoto's Thyroiditis -- Stable 2014

Anemia -- Resolved

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Allergies and Food Intolerances

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Thanks for your thoughtful response. You are right that I may still be having symptoms, although I feel much better than I did last year at this time. I have made an appointment to see my OB, whom has generally been more responsive regarding my concerns about the impact of Celiac disease on my hormones/cycles in the past (its also a little easier to get in to see her than other doctors). I won't be seeing her until October, which gives me a little more time to sort out what is going on with my cycles. But its reassuring to have a plan.


I'm not interested in waiting longer to try to conceive, although I do appreciate your concern. Its been the opinion of most of my doctors that we actually discovered the Celiac disease fairly early, for several reasons, so I'm optimistic that much of my healing may have occured (despite my missteps regarding my diet).


I have decided I will avoid eating at resturaunts, and plan to bring as much food as seems reasonable when I go to other people's homes. Hopefully this will prevent any more set backs, and ensure a healthy pregnancy.


Thanks again for your comment, I do need to try to be more patient with the healing process. I am still integrating this disease into my identity, so to speak. Its hard for me to feel so controlled by food because prior to this diagnosis I never was a picky eater, and never really struggled with any food issues. I don't like having to think about it all the time! I also often feel like a burden or a bother when I am eating out or going to a friend's house for dinner, so I'll need to work on that.

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Do go ahead and make an appointment with your OB/GYN to discuss the irregularity of your cycles. Hopefully your doctor will be able to set your mind at ease. Stressing out about getting pregnant can be counterproductive so the less you worry about it the better your chances of concieving. Try to relax and enjoy your little one and your husband and hopefully a little brother or sister will be in your future before too long.

Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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