My favorite folks ! :)

01 May 2009

This is likely to be long

Subtitle: Celiac, Gluten intolerance, pain issues, chronic fatigue, trying to conceive, trying to conceive after 40

I also plan to try to stick to facts here, & not delve into emotion too much. Probably not much humor here either. I may throw in some pics to break it up!

Also Curly Muse from Discovering Mars asked why we are away from home two nights a week. So i added a link in the column over to the right linking to my first 2 posts. Number 2 explains why we're gone two nights a week.

Jessie from Blog Smog (glutenfree4goofs!) wrote me recently. I really appreciate her blog on baking & cooking gluten free & also her commitment to her kids & raising them in a healthy environment. I'm going to answer her directly, but my answer might be too long, & involved. Also, for those interested it will be here as well. Her question was if i have celiac disease & that it could be related to fertility. My answer to that is quite long.

I came across this vid on infertility at another blog yesterday. I didn't feel i "learned something" so much as it seemed to beautifully illustrate the pain of living with this.

Celiac disease - we will probably never know if i have celiac disease. (The link will give basic info on this.) In order to test for celiac disease the patient must have been eating products with gluten in them for 4 to 6 weeks before the tests are done. They run some blood work & if this is positive they do a biopsy of the small intestine to confirm the diagnosis. It is recommended that people not start a gluten-free diet until they have already had the testing to confirm.

I didn't start out to have a gluten-free diet, & i don't think i had ever heard of celiac disease when i began eating gluten-free.

Also, a MD would NEVER have looked at me & thought "celiac" at that time, probably not now, either. Celiac prevents your body from absorbing nutrients in the small intestine & so "traditionally" people with celiac are very thin & unhealthy & unable to gain weight. In the years since then some docs working with this find that celiac also can result in overweight issues as the body stores the stuff it doesn't know how to deal with, tho nutritional deficits are still in play. However, most MDs haven't kept up with this info & still are operating on what they were taught 15 or 20 years ago & so don't think of celiac in someone of normal or over weight.

I've been dealing with fatigue issues since i was 14 or 15. I started seeing docs looking for an answer when i was 16 (& that age because i had a job & could pay for it; my parents were unaware i saw these docs). I knew there was something physically wrong with me, but the docs told me "depression." So in my 20s i was looking into whatever i could think of or find as a possible explanation. Anemia, low blood sugar, i don't remember all the things i looked at. But when i would present them to a MD, & especially when all the tests returned "normal" they immediately said "depression." In time, yes i was depressed because i was so tired, & because of my family life/childhood i carried a lot of baggage, but i don't think i ever quite believed it as depression & only depression. Also none of the anti-depressants they gave me - & i think i tried them all plus some combinations - ever helped much, if at all.

Also, in my early 20s i began having severe - & i mean REALLY severe - pain issues related to my cycle. I've never heard of anyone else having anything remotely similar to what i had. I think i've already blogged about this, but let me say that NO pain med of any type was helpful. I tried them all, codeine-based, anti-inflammatory, everything they had to throw at me. Demerol did not help. I eventually learned that Diludid did work, but that is not something you can be on 10 days out of the month.

A couple of years after college (in the mid-90s) i came across the idea of candida overload causing issues like i was facing. Now, any conventional MD worth his salt would immediately refute this. I had one tell me that the only people who had candida issues were people with advanced, terminal AIDS. But by this time i had decided that MDs don't know nearly as much as they think they do & i needed to try something. So i began a "modified" candida diet - which is essentially gluten-free. The early stage of a candida diet is simply Meat, Eggs, (limited) Vegetables & Yogurt. This alone is not healthy, but the plan only has you stay at this phase for 4 weeks or so. And, within 4 to 6 weeks my pain level was down by 50%.

Now you would think that i'd be over the moon about this, & i was. But in time i began adding back in things i missed & before long i was back to where i was before. A couple of years later i tried the straight candida diet - not modified. They warn you not to do this without a doc's supervision, but i couldn't afford that. They also warn you that you WILL be sick if you have candida issues because the die-off of the yeast is toxic. And i was sick. And sick. And sick. I had expected 2-3 days of flu-like symptoms. I did not expect 7 days of the worst flu i'd ever had. In desperation i called a doc that handled candida issues on day 5. His office was rather rude to me & his initial fee was $300. I just ached all over. Instead of seeing him i went & had my first ever massage. (And the result of that was i became a massage therapist a couple of years later.)

I know now that had i continued the program even just a few more days i would have broken thru & started to get better. But i was so discouraged & depressed & just didn't care that i went back to my very unhealthy, processed-food, gluten & junk food heavy diet. My mental health went down hill, & only by the grace of God did i get thru that.

Eventually i did get healthier in my mind (tho how that happened on the "food" i was eating only God knows). About 18 months after i was pulling up out of that tail spin i met Duane (we are coming up on the 6 year anniversary of that). He knew of my pain issues early on, & that i might not be able to have children. In fact, i tried very hard to scare him away with stories of my history because i thought he was just really too nice a guy to be tied down with me.

I didn't scare him off & 10 Sept 2004 we were married. On 1 Oct i began the "modified candida diet" to try to get the pain level down enough to go off birth control. (Being on the birth control pills & later the ring did lower my pain levels some. However low-dose estrogen birth control - which i was on during that tail spin - really messed with my head. A psychiatrist i saw later called that type of BCP "psychic poison.")

In Jan 2005 i went off birth control & another med i was on (topamax for migraine & depression but cannot be taken while pregnant) & did the full candida diet, warning Duane that i might become very ill. But that did not happen. I guess that the modified version had cleared me enough that i didn't have much left to do the die-off that had made me so very ill before. And my pain level was down very tolerable. When i was eating the unhealthy diet, my pain level was typically 9 sometimes even 10, so bad that i just didn't want to live. Fortunately for me it was intermittent. Had it been constant i probably would have killed myself long ago. After doing the candida cleanse the pain was down to 4 or 5, where i found it to be very livable.

In February i was baking some biscuits for Duane & i snagged one. Within half an hour i had a raging migraine. Oops, better not do that again. Then in March Duane & i shared a pizza. Again a raging migraine. And i was on my way to learning that while candida may have been an overt problem for me, gluten is an ongoing constant.

But gluten is such a part of our culture & food & the things that we like. I had a hard time being consistent. And my reaction to eating gluten was not consistent, either. Sometimes i'd have the headache. The smallest amount could raise the cycle-related pain to previous levels. But other times it didn't bother me. I discovered that it seemed to be hormone/progesterone related, & so early in the month i was "safe" later in the month was disastrous. So i stayed gluten free most of the time.

In June 2005 i went off Prozac, the last routine med i had been on. (I used to really, really believe in the medical system & "better living thru chemistry," & so i used to use a lot of Rx meds.) At that time they were saying that Prozac was safe in pregnancy, especially if the mother "needed" it. But i read an article saying that they had done testing on 4 & 5 year olds whose mothers had taken Prozac during pregnancy. They said there was a difference in the brains of these children compared to children whose mothers had not taken meds. The article said they didn't really know what the difference was, how it occurred, or even if it was important, but there was a significant difference. My decision was that it is not fair to a child to take any kind of chance, & i quit the Prozac. And i've never looked back. I have found i didn't need it, & that eating healthy did for me all the things that anti-depressants never did.

In August that year i began seeing an acupuncturist. I was pregnant within 3 weeks of that first appointment. Unfortunately, we lost that pregnancy at 10+ weeks, on 16 Oct. Her heart was still beating, but she implanted low & as i moved she tore away from the uterine wall & was pushing out my cervix. Duane swore it was a girl, & so we call her Kaylee. This has been my only confirmed pregnancy. I have had 2 others i believe, but they were early losses without + test.

The new few months following this loss i ate gluten-free most of the time. But in the
spring of 2006 i had trouble staying motivated. Eventually i wanted to KNOW if i really had to eat gluten-free & started eating gluten again so that i could be tested. Also during that time a neurologist i saw for migraines documented the migraines as largely triggered by gluten so that i would have it in a medical record. The family doc i had then also documented "gluten intolerance." After 3 weeks of eating gluten regularly i was quite ill, & ran the blood tests. They came back negative. It may be that i just didn't wait long enough (it might have been 6 weeks before i had a + test) & even then i would have had to continue eating gluten for the biopsy. I decided that it was obvious i was gluten-intolerant & that it didn't matter that much whether i had celiac or not.

I still "cheat" on occasion with gluten. Because my reactions are not consistent, i don't
seem to be as sensitive as some gluten-free people i know, i usually can get away with this without extreme consequences. However, as time has gone on i find that many of these things just don't taste all that good to me any more. These days "cheating" often consists of a thumb-nail sized piece of Duane's bread at a restaurant with some butter. I rarely want more. There are some things i'd like to learn to make - squaw bread is one i really miss, & focassia is another. But i have learned to make a number of things, brownies & poppy seed muffins & coffee cake & short bread are a few, that other people don't even realize are made with non-gluten flours. And i'm anxious to try more with the new Xanthan Gum i bought.

I was going to write more on the things i've done to be healthier & try to have a family,
meaning the changes we have made in our home. In brief they are changing over to organic foods, fewer processed foods, changing the things i use to clean & cook with, the soaps & products we use, oh a long list of things. I've done a lot of alternative therapies. Also i have learned that the issues i have are beyond gluten-intolerance. However, this post is extremely long & i think i've said enough.

But, please let me add this: I am not 100% anti-conventional medicine. I believe it has a place in our lives. But it think it has the wrong priority with most Americans these days. We want a pill or a quick fix. Even if a doc recommends a diet, it often is not a good one.
There is too much of a "low fat" & "all fat is bad" attitude for us to be healthy. Processed foods that say "low fat" are not healthy. Sugar substitutes are chemical & not healthy. I could go on & on.

My experience
- & this makes it anecdotal & an opinion only - is that most of the problems we experience with chronic illnesses could be addressed or managed with diet & healthy living. The depression the docs kept telling me i had was largely resolved by the many healthy changes i have made. Now i am not saying that this would cure 100% of folks diagnosed with depression, but i can't help but wonder if 50-80% would not be much improved if they changed their diets & other chemicals they are exposed to.

And, i've known couples in their 40s who had tried fertility Tx, IVF & all, & had it be unsuccessful. Then when they quit trying & began eating a healthy diet they got pregnant on their own.

Now, please don't misunderstand me. I am not denying that there are people who need the fertility treatment & who will not get pregnant without medical intervention. I am not dissing those who chose that path. But i can't help but wonder if many of those people would not need medical intervention if they made lifestyle changes that many would consider drastic. If nothing else, especially the younger ones, i would so much encourage them to spend a year really looking at what healthy living is & make those changes before turning their lives over to the medical professionals.

Ok, off my soap box. Sorry.

If you're read this far you are amazing!

This is myself with Logan, summer of 2007. Duane's cousin's child, who is 2 months older than Kaylee would be.



Curly Muse said...

I did read it! I think that maybe you beat yourself too much over Kaylee. You have mentioned her many times and while it a loss, I think you need to remember that I was not meant to be an she could not be born. I canot imagine how I would feel or how hurt I would be to know about her beating heart and know that she was a girl.. But I think you need to really put her rest. Not forget, but put her to rest and not torture yourself.

I love you posts and hope to continue to read them.

Bob-kat said...

What a happy photo :) It sounds to me like you have come to a good way of managing and controlling your health issues and making it your lifestyle. Good for you! It takes a strong person to be that persistent and stick to their guns and then to change themselves. I am glad you expereince much less pain these days as a result and ahve my fingers crossed for you as you try for a child.

Thanks for your kind comments on my blog. I appreciate it.

Teresa @ Grammy Girlfriend said...

I enjoyed reading your blog today. What a story. You are in my prayers. Thanks for visiting my blog.
I am so still new to the land of blog, but so loving reading others stories. Everyone has a story and so many of them are so touching....
Hope you will stop by for another visit.
The May give-away has started and this month there will be 10 winners. I will be blogging from Disney World soon...

Anonymous said...

Hi Kathryn,

First of all I wanted to thank you so much for your comment on my page!
Secondly I wanted to say how sorry I am for your loss and your unfortunate health problems. I don't know how you felt loosing your baby but, I do know what you went through. I lost a 7 week old baby due to an ectopic pregnancy. They showed it to me and it also had a very beautiful heartbeat. I was bleeding internally and almost had to have a blood trasfusion. I believe it was a boy!
I was told I couldn't have any more children because I was high risk but, I have my little girl. She was concieved just two months after my loss.

Keep your chin up miricles do exsist.

Praying for you,


Linda said...

I enjoy reading other people's stories and find it all very interesting. I can relate to your experience with doctors. I remember wanting to say, "Yes, I'm depressed because doctors like you won't believe that something is wrong with me, but it's not depression that's causing my problems." Anyway, thanks for sharing.

(I answered your question about banana bread in the comments of the post.)

DeniFay said...

Hey! I found your blog through Stacey's because I liked your comment today on her blog (maybe it was yesterday, who knows?). Anyhow, I have been considering trying to go gluten free for a while now, and have made a couple of short-lived vain attempts. But after reading your story I am again persuaded to try it. I think I have gluten intolerance, even if not full blown Celiac, which can only be diagnosed once irreversible damage has been done (you'd think they'd check for intolerance b/f long term damage is done!). Anyhow, If you could tell me how you started, or any pointers, I'd love that!! You can email me at