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Feeling Discouraged...
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7 posts in this topic

Two months ago I was diagnosed as celiac. I believe I have only been Celiac for 1 1/2 years before diagnosis. I was just fine with zero problems and allergies until a large round of antibiotics. After the antibiotics - I ended up with alot of digestive issues, rashes, headaches, ect ect.

Anyhow...DH and I have two daughters. We were trying to conceive this year(before diagnosed) and ended up with 3 miscarriages. We never had any problems conceiving our daughters (but that was back when I was healthy.) I have been on a very strict gluten free diet for 2 months. I feel discouraged because we want so bad to have one more baby, and I worry it'll never happen. The miscarriages hurt me so bad and I worry I'll have difficulty carrying a baby to term.

Otherwise,I feel better, all of my symptoms have gone away and I actually feel great. But I find every now and then I get an occasional rash despite being as strict as I can with the diet. I home cook all our food and we never eat out.

I have been rash free for a full month, then I eat some Hersheys dark choc chips on yogurt and I get a rash. I can't contribute it to anything else but the chocolate chips - but they are supposed to be gluten free. I get discouraged because I'm trying to take care of my health and stay gluten free so we can TTC but then I feel like I've been set back. I know I've only been celiac for 1 1/2 years so I'm hoping the damage to my body hasn't been too great.

My other concern is I read alot of stories of women who have entered early menopause due to celiac. I'm scared that could be me. I have had the worst hot flashes (when eating gluten - before diagnosed), just horrible sweating spells. They have gone away since being gluten free and only come back when accidentally glutened. I am 34 years old my periods are exactly 28 days like clockwork and very normal.

We want so bad to extend our family by one more.

Can this happen for me? Has anyone else been through this? Are these normal feelings?

Sorry, if my post was all over the place - this has been bottled up in me.

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Welcome to the forum, Alexis. I am so sorry you are going through this sad, sad time with your miscarriages. It is very heartbreaking and stressful. But you are very young still -- many women today don't start their families until your age, so please don't think that your time is past.

With the miscarriages your body is sending you a message that it is not yet ready to carry a child to term. Gluten exacts a terrible toll on us and it does take time to recover. If you have not already done so, have your pcp run a blood panel for all your vitamins and minerals because celiac is a disease of malabsorption and you may be low on many of these, vitamins A, B, E, D, K, especially D and B12, but for babymaking folate as well, and iron/ferritin, potassium, zinc, magnesium. Once you have all these nutrients in good balance your body should be ready again to carry your next baby. Do not be in too much of a rush to conceive because you and the baby both need to be healthy :)

Two months is actually a very short time in the the period of gluten recovery. It took you one and a half years to get where you are, so it is going to take you a while to get back. Not the 1-1/2 years (actually a very short time in which to be diagnosed) but if it were me I would give it six months to restore your health. Many, many of our posters who had trouble conceiving before diagnosis have no problem once they have regained their health. :)

If your periods are regular and you are no longer consuming gluten, I think you are pretty safe from early menopause. Sweating, hot-flash-like symptoms can occur without menopause.

The rash is possibly beginning dermatitis herpetiformis which is the skin version of celiac, which can persist for some time after you stop eating gluten and is often aggravated in some people by iodine. So you could try avoiding foods high in iodine - such as milk and egg yolks, seaweed (sushi), etc. A google will show a list of these foods. So it is possible the yogurt contributed to your rash.

So keep up the good work of staying gluten free, supplement as necessary and in a few months you should be able to conceive and carry your baby to term. Do not be discouraged. You are doing well and have come a long way. :)

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Welcome to the forum, Alexis. I am so sorry you are going through this sad, sad time with your miscarriages. It is very heartbreaking and stressful. But you are very young still -- many women today don't start their families until your age, so please don't think that your time is past.

With the miscarriages your body is sending you a message that it is not yet ready to carry a child to term. Gluten exacts a terrible toll on us and it does take time to recover. If you have not already done so, have your pcp run a blood panel for all your vitamins and minerals because celiac is a disease of malabsorption and you may be low on many of these, vitamins A, B, E, D, K, especially D and B12, but for babymaking folate as well, and iron/ferritin, potassium, zinc, magnesium. Once you have all these nutrients in good balance your body should be ready again to carry your next baby. Do not be in too much of a rush to conceive because you and the baby both need to be healthy :)

Two months is actually a very short time in the the period of gluten recovery. It took you one and a half years to get where you are, so it is going to take you a while to get back. Not the 1-1/2 years (actually a very short time in which to be diagnosed) but if it were me I would give it six months to restore your health. Many, many of our posters who had trouble conceiving before diagnosis have no problem once they have regained their health. :)

If your periods are regular and you are no longer consuming gluten, I think you are pretty safe from early menopause. Sweating, hot-flash-like symptoms can occur without menopause.

The rash is possibly beginning dermatitis herpetiformis which is the skin version of celiac, which can persist for some time after you stop eating gluten and is often aggravated in some people by iodine. So you could try avoiding foods high in iodine - such as milk and egg yolks, seaweed (sushi), etc. A google will show a list of these foods. So it is possible the yogurt contributed to your rash.

So keep up the good work of staying gluten free, supplement as necessary and in a few months you should be able to conceive and carry your baby to term. Do not be discouraged. You are doing well and have come a long way. :)

Thanks, I really appreciate the information. I needed to hear something positive.

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I got pregnant 2 months after going gluten free (January of this year) miscarried in February and got pregnant again in July. I'm just about 26 weeks now. We did almost 4 years of fertility treatments with no results, diagnosed and within months I was pregnant with zero help. It takes time for your body to really heal.

Hang in there =)

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There should be a law that they have to test for celiac disease first before prescribing fertility treatments! :unsure:

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I got pregnant 2 months after going gluten free (January of this year) miscarried in February and got pregnant again in July. I'm just about 26 weeks now. We did almost 4 years of fertility treatments with no results, diagnosed and within months I was pregnant with zero help. It takes time for your body to really heal.

Hang in there =)

Congratulations on your healthy pregnancy! Thanks for reminding me that it takes time to heal - reading these posts has been helping me feel more positive about it.

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It took me a good 18 to 20 months to get pregnant as my body healed from Celiac and I now have a healthy 9 month old. Also, like you, I get crazy "hormonal" type symptoms after getting glutened. I wish you the best!

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    • First, do you have celiac disease?  Have you recently had a celiac antibodies follow-up blood test panel to see if gluten has been actually getting into your diet by accident or through cross contamination?  If you haven't had the test, you should ask your doctor for one.  You could also also ask for a follow-up endoscopy to see if you intestines have truly healed.  This will rule out if gluten is really the problem.    If you don't have celiac, I assume you have Non-celiac gluten Intolerance because no one would stick to the gluten-free diet for six years unless you have had reductions in symptoms.  There is no test for NCGI unfortunately.  So, it is hard to say if gluten has been sneaking into your diet.  You really are going to have to try to figure out if you are getting gluten into your diet.  If gluten is not the problem, then your doctor needs to check you for other issues, like SIBO. There is a test to check for SIBO.  Has this been done?   Once a celiac, always a celiac.  There is no cure for celiac disease except to remain on a gluten free diet for life.  I am not sure about NCGI.  Not much research has been done.  Maybe others can chime in?    
    • I am so confused right now.... 6 years ago I went on gluten free diet... after being on it for the first yr I was 100%better up until 5 months ago in got the "flu" the doctors told me to cut out dairy sonic did and my diarrhea  became better but not completely gone would not have it every day tho. I went to the gi doctor and they said to cut out fructose and dairy and keep gluten out... yesterday I went to the dietitian to see what I can eat and she gave me the list for fructose... she said it should have been on a antibiotic for sibo.... eventually I will be able to add dairy back and maybe gluten.... I said how can I add gluten back when this was my first problem... she goes well through fructose goes hand in hand with it... I said with gluten I vomit and am sick for weeks.... fructose isn't that bad I vomit sometimes but I'm not sick for weeks.... I'm just confused on really what is going on and was wondering if you or someone you know had sibo from gluten and or fructose and how Is this all related?
    • I see no one has responded to your query.  Unfortunately I have yet to try making a pie crust.  It was something I never mastered before going gluten free.  Have you looked on Pinterest?  You might find something there.
    • I honestly feel like both doctors think it's all in my head even though there is proof.  Yeah there was a point when I felt crazy.  That was when I was being shuffled from dr to dr being given individual diagnoses of my problems.  None of those diagnoses ever made me get better.  Seriously I was diagnosed with heart palpitations, neurocardiogenic syncope, I was given a butt load of steroids because a dr felt like I was producing too much adrenaline, freaking had a few tell me I was depressed, and the good ol IBS.  It seemed most wanted to push pills.  It's all just ridiculous!
    • I can't believe your doctors!!! You have a daughter who is dx'd already! Yet the ped doesn't want to test your other kids unless you have a dx????!!! Are you kidding me???!!! That's absurd!!! They have a first degree relative who has been dx'd with celiac already. There is no need to wait to see what you turn out to be!! And then, and then, and then....don't even get me started on your doctor!!! Does he have brain damage? Oh this is insane & ridiculous!  I have never heard of a disease that doctors are so unwilling to consider or test for OR to diagnose as this one! Usually they are hot to trot to make a dx but say the word celiac & they shake in their boots. Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr!!!!!!!!!!!!!!!!!!
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