Don't Even Know What To Title This...

[livelifelarge24]

I have a pretty clear cut reaction to gluten when I get cross contaminated. It can be less or more severe depending on how much I got in me and how long I was exposed before I realized it... I even have a list of the symptoms I normally get that I keep in my notebook. Since brain fog is one of the top most frustrating things that happens, that list helps me sort it out when I'm feeling unclear. The first thing that usually happens is I start crying for no reason (I am usually not very emotional) and then the brain fog starts. Usually once the brain fog sets in then the stomach cramps and diarrhea come within a day or so.

Lately I have not been feeling quite right. I have an INCREDIBLE load of stress on me because I am planning my wedding and it is coming up very quickly. There has been a ridiculous amount of family stress involved. I am working up to 12 hours a day between the new business I started, a book I'm writing, and planning all the wedding stuff. It is FUN but I am not a very social person and have learned to just kind of be a homebody where I can control my environment. The wedding planning and activities have forced me to be out and about all the time! This causes me some anxiety and its also caused me to not be eating very much or very well - I've been on the road almost every day and not planning my meals or packing food. I can go all day without eating sometimes just because of a lack of options. Please, no lectures, I know I need to remedy this asap. My business took off very fast, much more quickly than anticipated and I was just very unprepared for all this travelling and business. On top of all of this, I was daignosed with a very painful condition called endometriosis. This is a "female" problem and the treatment for me is a new birth control which I have only been on for a month. My body is definitely trying to adjust to it and my hormones have been out of whack.

So, I have been emotional. I have attributed that to the hormones - I have all the other symptoms too, cramps, acne, etc. So that made sense. Then I started forgetting things and doing silly stuff. Kind of like brain fog but not as severe. I am running from one thing to the next with barely time to think and haven't been sleeping well because of the stress. So I figure that makes sense why I'm acting kinda goofy.

But then a couple of days ago the stomach aches started. Now I am worried that I may be getting glutened! My fiance says that I am having the stomach aches because I am so stressed and eating hardly anything at all. I believed him for a bit but now that my stomach has been acting up a few days in a row I'm getting concerned that I may be getting cross contaminated. My symptoms are definitely not as severe as past glutenings and I don't feel the depression or very bad brain fog. But if I'm getting cc'd it is definitely in minute amounts so maybe that would explain the lesser reaction?

I know that I need to take better care of myself right now. I just literally don't have TIME! I am in a celiac support group and take an hour a week to go to counseling. But other than that my life is absolutely, insanely hectic. I feel so frustrated and alone that I have to take time that I don't really have to sit and dissect every food label and now every cosmetic label. I switched facial cleansers this week and thought the new one to be safe. Now I see it has vitamin e derivitave in it so I am worried! I guess I just really need to vent right now. I want to be enjoying this very happy and exciting time of my life but I just plain don't feel well :/ Any advice on whether you think I may be getting glutened? And how to maintain balance in my life when my lifestyle requires eating to be so much more difficult? I have four BIG trips coming up and I haven't travelled gluten free yet so I'm nervous!

[pricklypear1971]

Well, I won't lecture you but will confirm what you already said - you need to take care of yourself and that means eating. Have you considered a personal chef???

Also, did you screen those bcp's for gluten??

I know how painful endo can be. I was lucky - mine was "cured" by pregnancy (although the trade off seems to be Hashimotos and Celiac???). Hmm, I'll have to reconsider that one .

[livelifelarge24]

Wouldn't a personal chef be nice? My fiance has stepped in and started cooking for me. He is awesome. He has taken this whole journey with me as we were together for a year when I was diagnosed. He is the only person that I trust to cook for me. The birth control is not a pill but the mirena. I would not be reliable with pills and they all caused me horrible side effects. That being said maybe the mirena is too. I definitely don't feel the depression or fogginess that I get with glutening. I am just used to THRIVING on pressure but pressure and being busy are a completely different story gluten free! No more stopping at Subway and eating in the car on the way home.

[rosetapper23]

Okay, the symptoms you describe dovetail EXACTLY with those that I suffered when taking a low-dose birth control pill that I took many years ago before I even knew I had celiac. Every single one of your symptoms happened to me--and the cramps and diarrhea that began after the other symptoms started (especially poor memory, difficulty sleeping, the compulsion to do many things every day, etc.) finally got me to thinking about what might be causing me to feel so sick. After much thought, I realized that the symptoms had begun when I began taking the new pill, and even though it seemed bizarre to me that it could have caused such unsettling symptoms, I stopped taking it...and ALL the symptoms went away. I strongly suspect that it is your new medication that is causing your woes and NOT any gluten in your diet. During the two months that I was on that particular pill, I lost a TON of weight because I didn't feel like eating, I had diarrhea immediately after eating, I felt compelled to run around like a crazy woman doing as much as possible, I hardly slept, and I couldn't remember by evening that I was even worried about what was wrong. The memory thing was very disruptive, and I felt completely out of control. Please consider switching--or even stopping--your medication. I truly believe that it's what is at the root of all your symptoms. Hormones can do crazy things to the body. After a lot of research in a time when the Internet didn't exist, I concluded that the hormones had caused malabsorption of Thiamine, which can cause all of the symptoms I exhibited. A medical source I found in the library pointed out that some hormone pills can cause malabsorption of Thiamine....and I think this might be a possibility for you, since you have celiac (as I do). However, no other birth control pills or hormonal therapies caused the symptoms--just that one medication. Good luck to you and best wishes....

[livelifelarge24]

Thank you for that reply Rosetapper23! Makes me feel a lot less crazy. I actually had the mirena last year and the side effects were pretty bad - bad enough that I had it taken out. I was SO RELIEVED when it was taken out that a lot of my irritaing side effects were gone. Unfortunately, without the hormone suppressing my endo it got much, much worse. I ended up spending more time in bed than out working, I was in so much pain. After ending up in the emergency room twice in one week from the pain, the doctor said I HAD to get the mirena back in to supress the endo. Its all very frustrating, but I'm glad you pointed out your symptoms. There is no other type of bc I can tolerate - I've literally tried them all. My ob/gyn said that the mireana was my last effort before a hysterectomy! I really would like to avoid that until I at least find out if I can have children. (My fiance REALLY would like kids). I guess I just have to choose between the two evils. When I had the mirena before, I was not diagnosed celiac yet so there would have been no way for me to differentiate what symptoms I was having. I went gluten free about half way through the 5 months that I had it. This time I was completely gluten free when I got it so it makes sense that it's causing all this craziness! I just don't know what is worse, the symptoms of endo or the side effects of the hormones :/

[rosetapper23]

Only you can make that determination....and I understand how hard choices regarding medications have to be made sometimes. You might try taking Co-Enzyme B Complex by Country Life to see if you can get some of the symptoms to abate. Although Thiamin deficiency might not be the problem (again, this was based only on my research at an old-fashioned library 33 years ago), if it IS what your medication is doing, this supplement may help somewhat.

I'm so sorry that you have so few options available to you...and I can't imagine living a normal life with such symptoms. I thought I was going out of my mind or possibly had anorexia nervosa. However, I can completely relate to wanting to have children. Understand, though, that if you become underweight, it will be much more difficult to conceive. You're living being a rock and a hard place....keep looking for options (perhaps at hospitals connected to medical schools).

[livelifelarge24]

At this point I honestly don't want kids at all. With all my medical "issues" I would feel awful passing that on to a child. But I want to leave the option open as log as I can. I'm getting married in 4 months and I know that things will change a little with that and as my new business gets settled. It's all frustrating, I really want to enjoy this part of my life and the wedding planning. That's why I GOT the bc, do I could get out of bed and stop being in pain! Now injury feel crazy.

[alex11602]

At this point I honestly don't want kids at all. With all my medical "issues" I would feel awful passing that on to a child. But I want to leave the option open as log as I can. I'm getting married in 4 months and I know that things will change a little with that and as my new business gets settled. It's all frustrating, I really want to enjoy this part of my life and the wedding planning. That's why I GOT the bc, do I could get out of bed and stop being in pain! Now injury feel crazy.

I had the same issues on birth control and for that reason was told I could not be on birth control, especially Mirena, despite having extremely heavy and painful periods which can last at least 2 weeks. And as far as having children, it is not the end of the world having a child with Celiac (I have 2 who also have some other food allergies and one has problems with her hearing), it is just a choice that you and your future husband need to make the decision together. I wish you the best of luck.

[Takala]

That ob-gyn is so full of *** it's pathetic, and if you keep listening to him/her you're going to be minus your reproductive organs in the prime of your life, next.

Artificial progesterone only (what is in the Mirena) is a NOTORIOUS bad side effect producer, and one of the known side effects is depression. So is the artificial progesterone in birth control pills. I have NEVER heard a doctor admit this in real life, only a few of the alternative - medicine and integrated medicine types will write about this. I have never seen a person on these progesterone-only type medications not complain that they were sick all the time and had been told it was "fibro" or "IBS." This is because this hormone affects the digestive tract ! We with already malfunctioning digestive tracts are more severely impacted. Duh!

The worst ob-gyn I ever made the mistake of seeing had the nerve to try to LECTURE me on how "irresponsible" it was at "my age" to not use birth control when I told her (after doing the research on these side effects) that the pharmatrash she was pushing to try to "control the endo" was making me sick every month for the 3 weeks I was on it. Believe me, I had a response for that which is not printable here.

Natural progesterones, such as in the over the counter cream supplements used by those in peri menopause, don't do this.

The way you get the endometriosis under control is by sticking strictly to a gluten free diet, not acting like you don't have to and constantly running the risk of cross contaminating yourself under the guise of "gee, I'm really busy." You also may have to go strictly low carbohydrate, and avoid a few other foods, take a gluten free vitamin and calcium and magnesium supplements. In every culture that has adopted a western style diet, the rate of female physical reproductive problems has skyrocketed. Gee, what a coincidence !

Having auto immune disease means to survive to actually function, you make time to care care of your physical needs, whether or not that dovetails with the culture of being "too busy."

[livelifelarge24]

That ob-gyn is so full of *** it's pathetic, and if you keep listening to him/her you're going to be minus your reproductive organs in the prime of your life, next.

Artificial progesterone only (what is in the Mirena) is a NOTORIOUS bad side effect producer, and one of the known side effects is depression. So is the artificial progesterone in birth control pills. I have NEVER heard a doctor admit this in real life, only a few of the alternative - medicine and integrated medicine types will write about this. I have never seen a person on these progesterone-only type medications not complain that they were sick all the time and had been told it was "fibro" or "IBS." This is because this hormone affects the digestive tract ! We with already malfunctioning digestive tracts are more severely impacted. Duh!

The worst ob-gyn I ever made the mistake of seeing had the nerve to try to LECTURE me on how "irresponsible" it was at "my age" to not use birth control when I told her (after doing the research on these side effects) that the pharmatrash she was pushing to try to "control the endo" was making me sick every month for the 3 weeks I was on it. Believe me, I had a response for that which is not printable here.

Natural progesterones, such as in the over the counter cream supplements used by those in peri menopause, don't do this.

The way you get the endometriosis under control is by sticking strictly to a gluten free diet, not acting like you don't have to and constantly running the risk of cross contaminating yourself under the guise of "gee, I'm really busy." You also may have to go strictly low carbohydrate, and avoid a few other foods, take a gluten free vitamin and calcium and magnesium supplements. In every culture that has adopted a western style diet, the rate of female physical reproductive problems has skyrocketed. Gee, what a coincidence !

. L

Having auto immune disease means to survive to actually function, you make time to care care of your physical needs, whether or not that dovetails with the culture of being "too busy."

I hope that my post wasn't misleading.... I have never, ever, once not even for a minute strayed from my gluten free diet, regardless of how busy I am. My reaction to even a small amount of gluten is severe and takes weeks to months to recover from. The point was that if I am on the road and haven't packed food, and am in a situation where its eat gluten or starve - I starve until I make it home. (To clarify, I am travelling in extremely rural areas - no stores or restaurants at all). After going gluten free absolutely EVERYTHING in my life got better and cleared up - except for my endometriosis and related problems. Those have all gotten significantly worse with time. I know that being on synthetic hormones is terrible for you - that's why I have suffered so long without. But my doctor is not stupid and neither am I... we had to try something after me missing two and a half months of work due to the pain! I refuse to just swallow pain pills forever. The hormones are proven to stop or slow the growth of new endo so that is the goal for now. Its not a cure but its a get-me-through the day without just covering up the pain plan. When somebody else steps in and pays my bills I will gladly stop saying "Gee, I'm busy," and running around like crazy but for now, I own three businesses and am planning a wedding. Like I said, I wasn't asking for a lecture, I know that I need to be more organized and prepare better and I have been. I was merely venting how frustrating it is to be dealing with something that has such similar symptoms to being glutened that it can be incredibly confusing. I am sure your doctor loved you telling her off and how stupid she is regardless of her 8+ years of medical education.

[Strawberry-Jam]

most of the women in my family had hysterectomies for various reproductive ailments... after they had children, but they had children really early so it was in the mid- to late-twenties for them. I often wonder if I'll have to get one at 25 too.

Remember that adopting children is always an option. Endometriosis often ends in infertility anyway, especially if like in your case treating it is so difficult. Do what you think is right. I don't understand it myself, but I realise having biological children is important to a lot of people. However, if you cannot have biological children, that doesn't mean you can't have children at all. Adoption is always an option--a wonderful, merciful option. Something to think about.

[livelifelarge24]

Strawberry_Jam you are right on. When I met my fianc