Newly Diagnosed With Dh And Infertile....

[Tephie]

Hi All,

My name is Stephanie, and I am 29 years old. I was diagnosed with DH a couple of weeks ago, and have been gluten free for 10 days (I think ) Anyways, both my husband and I have been trying to get pregnant for three years, with absolutely no sucess. We have been to a fertility clinic and they diagnosed me with "old eggs". I called the fertility clinic when I received my DH diagnosis and asked if this could be the cause of my "old eggs" and they said possibly. Have any of you had any experience with this or have any knowledge in regards to this? I have read on the internet that having Celiac and eating gluten free can resolve infertility, but none of the information I have read has been specific about what was causing the infertility. Just on another note, my husband's mother has DH as well, he has never been tested. During our fertility testing his seman analysis came back as bad morphology and a low count, could this be a side effect of undiagnosed Celiac? I haven't run across much info regarding male infertility and Celiac disease. Any words of wisdom would be appreciated.

Thanks in advance, Stephanie

[Eriella]

I want to preface that my knowledge about this is very limited, it is what I got from a celiac podiatrist who is an alum of my college. Celiacs affects the fertility of both males and females. In males it reduces the mobility of the sperm so they won't be able to swim to the egg before they die. In females it weakens the egg so that it will not catch the sperm. Pretty much it is like the egg is not strong enough to become a zygote or embryo.

What this means is that if you go off gluten, and are still young enough, there is a possibility of conceiving a child. However, you could be both celiac and infertile, separate from each other. You husband also may have celiac disease. That would mean that if both of you go off gluten, and stay good, then 1-2 years from now you could get lucky.

Best of luck!

[April in KC]

Stephanie, I had a different long reply for you but lost it! My own struggles do not compare to yours, and I really sympathize with you. Three years! I will share part of my story, though, because I it may partly relate to what you asked.

Yes, I do think gluten intolerance / DH / Celiac can affect your fertility in many possible ways. First of all, many people here believe (supported by research) that if you do have DH, then you have Celiac Disease, period. Although intestinal symptoms are often absent or present in a lesser degree with people with DH, the long-term effects (like certain cancer risks, etc.) are said to be the same. Second, Celiac can interfere with your nutritional status, bringing along other problems. Third, untreated DH / celiac can bring along (or at least be associated with) other autoimmune conditions. If you look around this board, you'll find a lot of Sjogren's, Lupus, Antiphospholipid Syndrome (that's me), Thyroid and Adrenal issues, etc., all of which can cause fertility problems. Fourth, gluten can attack individual organ systems (more on that later).

I had mild DH on my elbows as a child, plus some stomach pain for a year or so when I was very young, but then both went away for several years. I had big problems with my reproductive system, however, my whole life. Ovarian cysts, endometriosis, pelvic pain, luteal phase defect (where you ovulate later in your cycle than you should), etc. Then, after marriage, a year of primary infertility and later, multiple miscarriages (three). Luckily I made it through with three beautiful boys today - prior to being diagnosed.

My symptoms laid low for many years, but I developed autoimmune problems anyway, and then after my third son was born, my symptoms all went into high gear and I finally got diagnosed. Then I went gluten free and found out gluten had been at the root of many problems I thought were unlucky health coincidences for me and my family.

You mention your husband...my husband has had a lot of GI problems his whole life, and he went gluten free when I did (couldn't be bothered to test, LOL, but said he thought it was a possibility - besides, he wanted to support me in my diet at home). He has felt a lot better than he has in a long time, and doesn't even want to eat gluten when he's away from home.

I'm not suggesting everyone benefits from a gluten-free diet, but there are many people who, genetically speaking, might do better without it. When you're intolerant to gluten and go gluten free, sometimes strange and wonderful things happen. I really hope that is the case for you. Three years is a very long road, and I don't want to give you false hope. But going strictly (and I mean STRICTLY) gluten free is something you really need to try (if you're done being tested - you need to stay on gluten for some tests), as it can have a great impact on some people.

I did not go as long as you have gone in attempting my first pregnancy, but at one time, I was considered as having "primary infertility" because we had tried for more than a year without conceiving. We used ovulation kits the whole time - my ovulation was normally around day 19, which is late (luteal phase defect). Then I miscarried very early, then conceived my son Nate. After Nate was weaned, I conceived rather quickly but miscarried two more times, each time accompanied by a host of strange immunological symptoms like mouth sores and even hives. An immunologist ran some blood tests and found antiphospholipid antibodies (an autoimmune condition which I believe was only part of the problem). He prescribed daily low-dose aspirin. I felt I was falling apart and "sick" and somehow vitamin deficient before each m/c, so I started taking a heartier vitamin & mineral supplement plus the low-dose aspirin. I was eventually able to conceive and carry two more pregnancies that way, prior to diagnosis.

Post-diagnosis, my reproductive system is working better than it ever has, and I have way fewer "female problems". There's no gray area here. It has solved some big issues for me, some too personal to mention here.

Researchers have proven that gluten intolerance is a spectrum of illnesses not just affecting the gut. They have now proven that the skin organ system can be involved (as in dermatitis herpetiformis) and also (importantly) the brain organ system (as in gluten ataxia). My guess is that with more time, they will find evidence that prove than many organ systems are negatively affected by gluten, in susceptible individuals. So, who knows - maybe the ovaries, too.

Try searching on this website for premature ovarian failure. I think you might find some more information. Also, ovulating too early or too late (as I did) can affect the quality of your eggs and their chance for survival.

My husband had morphology and motility issues, too (about 50% were effected). We don't really know if gluten was related. He's never been formally tested for Celiac, but all three of our sons have gluten intolerance or Celiac, so it seems likely that both of us may be carrying the genes that allow it to develop.

Best of luck to you.

April

[Tephie]

Stephanie, I had a different long reply for you but lost it! My own struggles do not compare to yours, and I really sympathize with you. Three years! I will share part of my story, though, because I it may partly relate to what you asked.

Yes, I do think gluten intolerance / DH / Celiac can affect your fertility in many possible ways. First of all, many people here believe (supported by research) that if you do have DH, then you have Celiac Disease, period. Although intestinal symptoms are often absent or present in a lesser degree with people with DH, the long-term effects (like certain cancer risks, etc.) are said to be the same. Second, Celiac can interfere with your nutritional status, bringing along other problems. Third, untreated DH / celiac can bring along (or at least be associated with) other autoimmune conditions. If you look around this board, you'll find a lot of Sjogren's, Lupus, Antiphospholipid Syndrome (that's me), Thyroid and Adrenal issues, etc., all of which can cause fertility problems. Fourth, gluten can attack individual organ systems (more on that later).

I had mild DH on my elbows as a child, plus some stomach pain for a year or so when I was very young, but then both went away for several years. I had big problems with my reproductive system, however, my whole life. Ovarian cysts, endometriosis, pelvic pain, luteal phase defect (where you ovulate later in your cycle than you should), etc. Then, after marriage, a year of primary infertility and later, multiple miscarriages (three). Luckily I made it through with three beautiful boys today - prior to being diagnosed.

My symptoms laid low for many years, but I developed autoimmune problems anyway, and then after my third son was born, my symptoms all went into high gear and I finally got diagnosed. Then I went gluten free and found out gluten had been at the root of many problems I thought were unlucky health coincidences for me and my family.

You mention your husband...my husband has had a lot of GI problems his whole life, and he went gluten free when I did (couldn't be bothered to test, LOL, but said he thought it was a possibility - besides, he wanted to support me in my diet at home). He has felt a lot better than he has in a long time, and doesn't even want to eat gluten when he's away from home.

I'm not suggesting everyone benefits from a gluten-free diet, but there are many people who, genetically speaking, might do better without it. When you're intolerant to gluten and go gluten free, sometimes strange and wonderful things happen. I really hope that is the case for you. Three years is a very long road, and I don't want to give you false hope. But going strictly (and I mean STRICTLY) gluten free is something you really need to try (if you're done being tested - you need to stay on gluten for some tests), as it can have a great impact on some people.

I did not go as long as you have gone in attempting my first pregnancy, but at one time, I was considered as having "primary infertility" because we had tried for more than a year without conceiving. We used ovulation kits the whole time - my ovulation was normally around day 19, which is late (luteal phase defect). Then I miscarried very early, then conceived my son Nate. After Nate was weaned, I conceived rather quickly but miscarried two more times, each time accompanied by a host of strange immunological symptoms like mouth sores and even hives. An immunologist ran some blood tests and found antiphospholipid antibodies (an autoimmune condition which I believe was only part of the problem). He prescribed daily low-dose aspirin. I felt I was falling apart and "sick" and somehow vitamin deficient before each m/c, so I started taking a heartier vitamin & mineral supplement plus the low-dose aspirin. I was eventually able to conceive and carry two more pregnancies that way, prior to diagnosis.

Post-diagnosis, my reproductive system is working better than it ever has, and I have way fewer "female problems". There's no gray area here. It has solved some big issues for me, some too personal to mention here.

Researchers have proven that gluten intolerance is a spectrum of illnesses not just affecting the gut. They have now proven that the skin organ system can be involved (as in dermatitis herpetiformis) and also (importantly) the brain organ system (as in gluten ataxia). My guess is that with more time, they will find evidence that prove than many organ systems are negatively affected by gluten, in susceptible individuals. So, who knows - maybe the ovaries, too.

Try searching on this website for premature ovarian failure. I think you might find some more information. Also, ovulating too early or too late (as I did) can affect the quality of your eggs and their chance for survival.

My husband had morphology and motility issues, too (about 50% were effected). We don't really know if gluten was related. He's never been formally tested for Celiac, but all three of our sons have gluten intolerance or Celiac, so it seems likely that both of us may be carrying the genes that allow it to develop.

Best of luck to you.

April

Wow, April. You are a wealth of information. Thank you very much. I will definately search this site. All the info I have read on the internet in regards to Celiac and infertility doesn't pinpoint what the fertility issue is. So I wasnt certain that my feritility issues would apply.

My feritlity doctor told me when the test came back for premature ovarian failure that we basically had a 5% chance of getting a live baby, and that's if we were ever able to get pregnant. So we looked into donor eggs and adoption, but haven't had the financial means to do either one of them. I have never had many cycle issues, and I appear to ovulate each month around day 14.

I have gone glutten free, I did all my tests already. I am trying very hard to be strictly gluten free as I know this could result in a baby...and help with my health in the long run. I am still trying to learn all the different aspects of eating gluten free, and I do believe I got glutened at a restaurant last weekend.

Again April, I really appreciate all of the info you provided.

Stephanie

[April in KC]

In case you don't have time to search, here is a research study abstract that another member, eLaurie, found about a young woman with Celiac and premature ovarian failure:

Open Original Shared Link

Good luck on your journey! I hope you stick around, too.

April

[Tephie]

In case you don't have time to search, here is a research study abstract that another member, eLaurie, found about a young woman with Celiac and premature ovarian failure:

Open Original Shared Link

Good luck on your journey! I hope you stick around, too.

April

Thanks again April! It didn't say if her premature ovarian failure resolved and she was able to get pregnant Oh well, I guess only time will tell. It did remind me that I will need to get my thyroid checked soon.

I will definately be sticking around. It seems like there are a lot of great people here with a wealth of information.

[Roxyk]

welcome to my world. I also was diagnosed with low ovarian reserve. I was gluten free for one year before I got pregnant with the help of a fertility clinic. I did Follistim (an injectable drug) plus IUI.

I am currently trying to get pregnant again & we are on our 12th cycle. I am just not responding well at all.

let me know if you have any questions.

[radgirl]

How common is premature ovarian failure and celiacs? I read the study that was posted, but are there any POF suffers on this board?

[Tephie]

welcome to my world. I also was diagnosed with low ovarian reserve. I was gluten free for one year before I got pregnant with the help of a fertility clinic. I did Follistim (an injectable drug) plus IUI.

I am currently trying to get pregnant again & we are on our 12th cycle. I am just not responding well at all.

let me know if you have any questions.

Did they base your test on the Clomid Challenge? If so, do you remember what your results were? My fertility doctor said that we would only have about a 5% chance of ever getting a live baby. I want to get a second opinion, and will work on that soon.

Do you know if once the damage is done from Celiac it cannot be reversed?

Thanks, Stephanie

[Tephie]

How common is premature ovarian failure and celiacs? I read the study that was posted, but are there any POF suffers on this board?

I am not sure how common it is, but I am definately a POF sufferer. Although from my latest research, I don't really fit the "symptoms", my FSH test came back elevated.

Stephanie