Trying To Figure Things Out....

[mama.laura]

I'll try to keep this brief and to the point....

I'm wondering if I'm gluten sensitive. I have no GI symptoms. I don't notice any change in mood, energy, general feelings of wellness or anything else. In fact, the only digestive connection I've ever noticed with wheat was a few years ago I'd get moderate stomach cramps (no diarrhea or nausea, just cramping) when I'd eat whole wheat bread (really "meaty" whole wheat.....not just wheaty wonder bread), or cream of wheat cereal. Nothing else caused it, and it doesn't happen anymore. So, I never really worried about it.

Recently, though, I saw an article about a connection to infertility and celiac disease, that piqued my curiosity. I was diagnosed with poly cystic ovaries when I was a teenager. I've never had regular periods. I'm not insulin resistant. I've never experienced a ruptured cyst. When I had an ultrasound 4 years ago, there were no cysts on my ovaries, nor was there any scarring which would be evidence of cysts in the past. Dr. said everything was beautiful in there.....I just don't work. My husband and I have been "trying to conceive" for 6 years with no luck. We've not tried fertility treatments, though.....I tend to lean towards a more natural approach. I've always been overweight....not horribly, but between size 14-20 over the past several years. The weight definitely affects my cycle. When I was a size 14, I had some periods (don't know if I ovulated....didn't think to figure that out at that point).....now that I'm a size 20, I have none. What I read in that article said that many times celiac disease goes undiagnosed because of a lack of GI symptoms. But that other symptoms could include stubborn weight and infertility.

Last year, we made a lot of dietary changes. Cut out most refined sugars, white flour, hydrogenated oils, pork and shellfish and soda. We try to eat as much organic meat and veggies as we can afford. We drink only raw milk from a trusted dairy (controversial, I know, but an educated decision) and buy our beef from there too. I also joined Curves and went fairly faithfully. I feel great....clearer complexion, thicker hair, drastically less...almost non existent diarrhea (had been a bit of a nuisance before, but not connected to wheat.....usually pork and fried foods), but now if I have those once in awhile, I don't have a problem with it. The problem is, after all of that, I haven't lost any noticable weight......maybe 5 lbs all year, and I'm still not ovulating or menstruating . There's the history....here's the question....

I want to cut back on gluten and see what happens, but I haven't decided if it's necessary to completely cut it out. Is gluten sensitivity a precursor to full blown celiac disease, or are they the same thing? Is it possible that since I don't have celiac symptoms that if I just cut back on gluten, I could avoid it progressing to the point of having to go completely gluten free. I'm prepared to cut out bread and pasta and baked goods with wheat flour....the main, big, obvious sources. I'd rather not worry about all the hidden gluten or small sources like in condiments and stuff if I don't have to. Do you think that it is necessary to go completely gluten free to notice any improvements?

I hope that all made sense. Thanks so much in advance for any help you can offer me.

Happy New Year!!

Laura

[Ursa Major]

Hi Laura, and welcome to this board. I see a few possibilities here. It could be celiac disease, that's one possibility. If you really want to give it a good try to see if it's the problem, you really need to cut out all gluten, or you'll never know. Eliminating all gluten means not just wheat, but rye and barley as well. And you'd really need to make sure that you don't get gluten in sauces (soy sauce, gravy) and condiments as well, as it could stop you from getting better if gluten is the culprit.

It is also possible that you could have a low functioning thyroid. One very obvious symptom is weight gain, and complete inability to lose weight. Another one is infertility. One good way of finding out if the thyroid is a problem is, to do a temperature chart. Measure your temperatures three times a day, three, six and nine hours after getting up. If your average temperature is consistently below normal you may have a thyroid problem.

Dairy could be a problem, too. I wholeheartedly agree that raw dairy is far superior to pasteurized dairy. But I don't believe we are meant to drink cows milk, and many people can't tolerate it, pasteurized or not.

I hope you figure it out, it must be hard not being able to conceive.

[Eliza13]

Very interesting post. Maybe my story will help shed some light. I got my first period when I was in grade 8. After that period I averaged about 1 per year. I had every test imaginable, but all came back negative so my doc just said you probably have PCOS.

Fast forward to age 30. After complaining about an itchy rash on my elbows, diarrhea, and fatigue, I was diagnosed with Celiac Disease. S stool test revealed high fat content and I had obvious DH.

Then came the surprise....I think I had been gluten free for about 5 weeks when I got my first period. Five weeks later I got another one.....and again and again. I swear that when I told my doctor that I was getting my period, he turned white. After all that testing, who knew that wheat/gluten was the problem??? I was trying to cure the diarrhea, and did not expect that my periods would finally normalize as well. I'm still quite amazed by it all. My doctor is not even sure what the connection is b/w celiac and absent periods, but we are sure that the gluten was causing the amennorhea. Never in a million years did I think that a food intolerance was causing me to not get my period. I'm still quite taken aback by it and quite amazed!!! I've asked this before, but will ask again: Does anyone know why and how celiac leads to amenorrhea in some women?

[mama.laura]

Wow! Didn't expect replies so soon! Why aren't you girls at a New Year's Eve party?? Anyway....

First of all, thanks for your help! Ursa - not the answer I was hoping for, but I still appreciate it and will keep it in mind;). I want success more than I want condiments.

Eliza - Very interesting. I was wondering if you've struggled with weight issues. From what I've learned from studying PCOS, a lot of times a small amount of extra weight is all that is necessary to throw off your hormones enough to stop ovulation and menstruation. When you have extra fat, your body produces extra DHEA (? I think), which is a testosterone. I've read that as little as 5% weight reduction is sometimes all that's necessary to resume your cycle. The problem that celiac disease contributes may be the stubborn weight. There's also a definite connection to PCOS and insulin resistance. High carbs aggravate insulin issues....wheat products are high in carbs. There's probably a connection there too, but my brain's not up to it tonight.

My PCOS diagnosis was pretty much a diagnosis of elimination too. Many tests...no conclusive results.....must be PCOS.....grrrr. The only level in my labs that was even a little bit off was the DHEA.....and it was only slightly elevated....the other hormones and thyroid tests were all normal. The DHEA could be up just because of the excess fat. But since they don't know what else to call it, its PCOS. I've never really believed that that's what I have.....I refer to it as "I was diagnosed with".....not "I have".

Have you been tested for insulin resistance?

[Eliza13]

Have never been tested for insulin resistance. I am of average weight. No problems there really, although I would like to look like a model (haha).

I am convinced that the problem is gluten. It's funny because prior to my celiac diagnosis I was always eating "super healthy". I was driven to eat "healthy" b/c of my constant fatigue, but nothing seemed to work. Ironically, I figured that I should be selective in my carb choice so as to maximize protein intake, thinking that would help with the fatigue. Basically, I chose to eat bread and pasta over potatoes and rice because the former 2 are higher in protein.....well, as many of you know it's the PROTEIN in those carbs that is toxic to celiacs. The point here is that although I ate extremely supposed "good/healthy" food for many years, I still not get my period. It was only when I eliminated gluten that I started getting them.

Never been tested for insulin resistance.

[celiacgirls]

I think if you want to test the gluten free diet, you need to be very strict. A few years ago, I tried it but didn't worry about hidden, trace amounts of gluten. I didn't feel any different and didn't notice any change when I added it back in. This time, when I started the diet, I was able to be completely gluten free and I could tell within 2 days that gluten was a problem for me. Now, if I have even a tiny amount of cross contamination, I can tell and my symptoms last 2 1/2 weeks. If I let myself have just tiny amounts regularly, I would never feel as good as I do now.

I also didn't have any GI symptoms but when I went gluten free I noticed I had more energy and focus and I was less irritable. It is inconvenient to have to worry about every single thing I put in my mouth but is worth it.