CC and pregnancy

Belle · Post by **Belle** » Thu Dec 22, 2011 7:37 pm

Hi everyone,
My name is Belle and I'm 30 years old. I was diagnosed about a year ago with Cc. I wasn't given much guidance with how to deal with it. I was on Pepto bismol for a while but got ear pain. I was not on any med for a couple of months though I still had pain sometimes in my lower right abdomen and I made frequent trips to the bathroom. The loose diareah like stool had stopped but I still kept having to go. To make a long story short, I was expecting a few months ago and miscarried at 9 weeks. The symptoms of my CC became exasperated during the pregancy and I was in a lot of pain although the stools were still not watery (though very frequent). I am wondering if the Cc could have put me at higher risk for miscarriage. This was my 4th miscarriage although the previous three were before I was diagnosed. I had always had irritable bowel but nothing like this. Thank G-d I did have some healthy pregnancies and am thankful for my beautiful children. I had always dreamed of having more though and am devastated about this past miscarriage and very unsure of my future chances. Does anyone have any knowledge or experience on the topic? I did read about going GF and DF but only just started to try 3 days ago. I was wondering also, what it means to be in remission. Does that mean no symptoms at all or just no diareah? If anyone has any answers for me that would be great! Thanks!
Belle

Post by **tex** » Thu Dec 22, 2011 8:12 pm

Hi Belle,

Welcome to the board. CC doesn't directly increase the risk of miscarriage, but the malabsorption problems that it usually causes might be a factor. With your history, though, it's a pretty safe bet that you are gluten-sensitive, (all but a very few of us here are gluten-sensitive), and gluten-sensitivity is definitely connected with miscarriages and other adverse pregnancy events. You may have even tested negative to the classic celiac blood tests, but those tests are worthless for the type of gluten-sensitivity that we have with MC - the classic celiac blood tests are so insensitive that they will only detect fully-developed celiac disease - that's part of the reason why it takes an average of about 11 years to get a celiac diagnosis.

Your IBS symptoms were probably symptoms of undiagnosed gluten-sensitivity. Only about 5% of celiacs are diagnosed, and that doesn't include those of us who don't meet the diagnostic criteria for celiac disease, but are just as sensitive to gluten as any celiac. The doctors are totally lost, when it comes to dealing with MC and non-celiac gluten-sensitivity.

To me, remission means no symptoms at all, and if I ever have any symptoms, I know that I have eaten something that I shouldn't have eaten.

Again, welcome aboard, and please feel free to ask anything.

Tex

Belle · Post by **Belle** » Thu Dec 22, 2011 8:29 pm

Thanks Tex for your quick response. Doese that mean that I really have celiac disease? I have been trying these past few days to go off gluten. How soon should I expect to see results? I actually feel worse so far. They did test my vitamin levels and I was pretty normal. I was only low on vitamin D and potassium so it does not seem to be that I have an absorption problem. I was wondering if the pain I am having could have caused miscarriage by contractions of the colon pushing against the uterus. If anyone has had any similar experiences and any solutions to have a healthy pregancy I would love to hear about it.
Thanks again.
Belle

Belle · Post by **Belle** » Thu Dec 22, 2011 8:38 pm

Hi,
One more thing. I'm curious if there could be any connection between accutate and CC. I was on accutane when I started having severe symptoms. I went off of it at that time but had been on it for a couple of months already (second time on it) and hope that it did not cause these problems. Right now I am kicking myself for taking it.
Belle

Post by **tex** » Thu Dec 22, 2011 9:16 pm

We are all different in our response times to the diet, (depending on how long we have been reacting, and other factors), but except for a few fast-responders, it usually takes weeks to months to show much improvement on the diet. The intestines are slow to heal.

I'll grant you, sometimes when my reactions were at their worst, my intestines would literally writhe like a snake, and the pain was severe, but I have no idea whether or not something like that could cause a miscarriage.

Have you ever been tested for celiac disease? If not, now would be a good time to do the blood draw, before you have been on the diet long enough for the antibody levels to decline too low to show a positive response on the test, (just in case you do have celiac disease). If that test is negative, then an anti-gliadin antibody stool test at Enterolab, in Dallas, TX, will show whether or not you have non-celiac gluten-sensitivity.

Accutane is definitely connected with inflammatory bowel disease, and CC is a form of inflammatory bowel disease.

Tex

Robin.booboo · Post by **Robin.booboo** » Thu Dec 22, 2011 9:44 pm

Wow, I haven't ever thought about whether it could be related as my children are now grown and I have only just recently been diagnosed, BUT... After I had my first baby, I got pregnant about six months later and I miscarried the day after Thanksgiving. I had another healthy baby a few years later, that I carried to term (both my boys are in college now).

My other autoimmune symptoms had shown up during puberty, I think. I have been spending a lot of time analyzing all this, and the rashes seemed to kick in around seventh grade and then the unexplained alopecia (bald spot on my crown of my head) started my freshman year in college and grew to the size of a silver dollar during my first pregnancy and then stopped and just stayed the same until years later when I had several cosmetic scalp surgeries to correct it. How wierd it would be if the autoimmune system rages during puberty, along with the hormones, and how awful it would be if we found out it rejects our babies when it rages... :( :( :(

I am one of the 2 who said on the endometriosis survey that I haven't been diagnosed but I think I may have it.

Robin

Post by **tex** » Thu Dec 22, 2011 10:14 pm

As you probably know, the body has protective measures to prevent the immune system from recognizing a fetus as a foreign body, and launching an attack against it. One of those protective mechanisms involves suppressing interleukin-2, which in turn prevents T-cells from recognizing and killing the fetus.

The inflammation that causes MC is due to the infiltration of excessive numbers of T-cells into the mucosa of the intestines, (and also into most other parts of the digestive system, though most GI docs aren't aware that the entire GI system is involved). These killer T-cells are normally kept in check by regulatory T-calls, but for some unknown reason, people with MC have a deficiency of those regulatory T-cells, and so the killer T-cells in essence cause an autoimmune reaction, by their unnatural proliferation.

This same T-cell response occurs with celiac disease, as well, so clearly, they are both linked to gluten-sensitivity. I'm guessing that this proliferation of killer T-calls can lead to an increased risk of damage to a fetus, but that's strictly a wild guess, and I'm not aware of any research that has been done to verify or disprove it. Again, this is just a guess, but I would suspect that the presence of endometriosis would make the risks worse, and there is a rather high correlation between endometriosis and MC.

http://healthmad.com/health/fetal-survival/

Tex

Lesley · Post by **Lesley** » Thu Dec 22, 2011 11:40 pm

I had 4 miscarriages. 3 kids. I had terrible pregnancies AND births, and was sick as a dog the whole time. Once I carried the kids to term they were fine.

Belle · Post by **Belle** » Fri Dec 23, 2011 7:20 am

Thanks for your replies. I just wish the tests with enterolab were not so expensive. Do insurances end up reimbursing?

Post by **tex** » Fri Dec 23, 2011 10:19 am

Belle wrote:I just wish the tests with enterolab were not so expensive. Do insurances end up reimbursing?

Some do, and more insurance companies are beginning to pay for these tests, as time goes on. You can call or e-mail Enterolab to get the codes for the tests that you are interested in, and then call your insurance company to see if the tests are covered. Some insurance companies require that a doctor must order the tests.

Tex

Stanz · Post by **Stanz** » Fri Dec 23, 2011 11:57 am

Belle,

I'm so sorry that you lost your babies, I lost 2 myself, but also have 2 daughters and only wanted 2. Robin referred to this thread: http://www.perskyfarms.com/phpBB2/viewt ... 036#112036

I don't know if there is a connection to gluten sensitivity or celiac and miscarriage, but would venture to guess if we ran a poll on how many of the women here have suffered miscarriages, it would certainly show a pattern that is statistically indicative that there is. I just posted on that thread a few minutes ago.

http://www.drugwatch.com/accutane/

Accutane

What does Accutane treat?

Accutane is an oral medication primarily prescribed to treat severe acne.

Approximately 5,000 personal injury lawsuits have been filed against Roche Pharmaceuticals, the manufacturer of Accutane, based on claims that the medication caused serious side effects. Lawsuits have been filed against Roche due to adverse reactions that may include:

Inflammatory Bowel Disease
Crohn's Disease
Ulcerative Colitis

There has been a lot of discussion here about MAP - mycobacterium avium paratuberculous - being related to bowel problems and there is a history of this in my family. I also used accutane for awhile when I was in my early 30's for acne like rashes. I also had hair loss and endless other weird infections, boils, etc. 3+ years before my Dx/w/MC, I had SEVEN UTI's in 1 year. I was convinced that I had MRSA, so my MD put me on a massive dose of Cipro. Turns out that Cipro also is used for MAP and I have since been tested for the markers for MRSA and I never had it. Stress and the Cipro is what kicked off my eventual Dx w/MC after 3+ years of non-stop D.

I believe it's all connected to the auto-immune response that is triggered by GS. I believe that if researchers really wanted to connect the dots, they could. I believe they don't because their research is paid for by the drug companies who survive and flourish because we are sick.

Merry Christmas

Post by **tex** » Fri Dec 23, 2011 1:00 pm

Connie wrote:I believe that if researchers really wanted to connect the dots, they could. I believe they don't because their research is paid for by the drug companies who survive and flourish because we are sick.

That's an interesting observation, and I certainly agree with you. A couple of days ago, I wrote a section for my book, which clearly, (IMO), proves a common etiology for both celiac disease and MC, (not just an association). IMO, it's so obvious that it's a no-brainer, and the proof has been available for decades, and yet no one has ever bothered to connect the dots. Apparently, researchers are not paid to think - they're only paid to verify "predetermined" conclusions.

Tex

Stanz · Post by **Stanz** » Fri Dec 23, 2011 9:29 pm

Cannot wait for your book to come out, I hope you're ready to have it blocked by the drug companies, Tex. We are the enemy. We actually think beyond what the researchers do. My oldest daughter begins nursing school next month. She did research for YEARS on "female issues" and salmon, under different employers. She's actually been published. So being a nurse is her newest, and 3rd degree, and she is a questioner of everything. She went GF a year before I did. She had a history of IBD that was likely triggered by overuse of antibiotics that were available OTC after she graduated college and spent 6 months abroad where antibiotics weren't prescription medicine. She was so exhausted when we picked her up at the airport when she came home that it was sad. She found 3 women on the train from Italy to Turkey who were moms and who took her under their wing and cared for her until she boarded a plane to come home from Istanbul. She never stopped trying to figure out the "dietary" element of her illness. She went GF in '08 way before I went GF in August '09, but had been hammering me to go GF for over a year at that point.

It gives me hope that when she applied for a full scholarship to nursing school, after writing her letter of intent that included her own history of mis/Dx that was resolve by being GF, and that she figured stating her opinions on that letter would "x" her out, she still spoke her mind. When she went in for "the interview" she knew in minutes that they had already decided to give it to her. Medical institutions are fighting for their patients, is what we make of this. She's a rebel, a questioner, she's who the selection committee chose for 1 of 2 full scholarships awarded a year. I don't think it's an accident. She is a troublemaker and I hope she gives them hell. I think they are counting on that. I hope they are counting on that.

draperygoddess · Post by **draperygoddess** » Fri Dec 23, 2011 10:48 pm

Belle,

As a mother of three, I can only imagine what you have gone through, and I am so sorry.

I read a statistic yesterday that women with celiac disease are 4 times as likely to miscarry. Without a definitive diagnosis of celiac disease, you still could be (and probably are) at least gluten sensitive, and many people with a gluten sensitivity have symptoms that are just as severe as those of a celiac. However, when the gluten issue is under control, I would think that the risk would be lower, since you would be absorbing nutrients properly and generally be healthier.

For the record, I had three healthy pregnancies and no miscarriages, but the vast majority of the women in my mother's family had miscarriages and/or secondary infertility. My mother was an only child for 13 years. Her mother (my grandmother) miscarried when my mom was 11, after years of trying to have another child. Two years later she spent her entire pregnancy on bed rest. My mother also lost a baby between me and my sister, and was unable to have any more children after that. There definitely seems to be a pattern.

Lesley · Post by **Lesley** » Fri Dec 23, 2011 11:08 pm

Makes total sense to me. 4 miscarriages (Belle, I know what it's like) unexplained, and 3 really tough pregnancies carried almost to term, and nobody knew why I was having difficulties.

In England (where both my sons were born, and where I had 2 of the 4 miscarriages) they knew about celiac , but it was thought to be a disease that affected children only. They didn't know if you could grow out of it. A friend of mine's baby was very sick, was hospitalized, and was found to have celiac. This was more than 40 years ago, and we had never heard of it. In those days feeding a baby with celiac was very hard, a full time job for the mother.
Europe is way more advanced than the US when it comes to celiac. Even in those days they knew to test the stools. But NO ONE had heard of gluten sensitivity. Barely anyone had heard of gluten. And no one would have thought of putting my problems down to it.