Help Me Whittle This Down

[mk1]

I don't know where to begin. I'm here in another attempt to find out what's wrong with me, since Docs don't seem interested in helping.

From around 1977 - 2001, I was on a fairly low-dose birth control pill. It was during this period that I lost all ability to be able to "read" my body, I believe.

Back in 2001, I'd probably already had IBS-like symptoms for years, but fibroids finally led me to have a hysterectomy (I wanted no kids, so no big loss, I thought). I kept my ovaries. I was a bit afraid that I had ovarian cancer, which is why I was almost eager to have the surgery.

Since then at least, I have what I thought were occasional, but may in fact be cyclical, problems with IBS/bloat/gas, acne, and foot cramps. I AM vitamin D deficient, and probably B12 deficient. I have osteopenia. When I don't have IBS symptoms, life is good.

I learned recently that I have ovarian cysts almost constantly. They come and go, probably with ovulation.

I have diverticulosis, but NOT celiac or SIBO.

I thought enteric peppermint was helping, but it doesn't always.

I'm getting tired of the constipation-leading-to-diarrhea-and-gas-so-embarrassing-I-hate-to-go-to-work, and the PAINFUL acne on my neck. The foot cramps may or may not be appearing at the same time. The bloating is unreal. It's really hard for me to see correlations between symptoms and timing (whether they're appearing together) or symptoms and food.

So -- can gluten-intolerance be cyclical? Or do hormone surges (ovulation) set it off? Or do I look more to a hormonal problem than a gluten problem? What do you think.

And, because I'm lazy and not currently responsible for preparing my own food (my husband is chef/house-husband), is there anything I can TAKE to lessen symptoms, if I cannot change my diet?

Thanks for any input,

MK

[ravenwoodglass]

Yes you do sound like you could be celiac/GI (I consider them the same thing). I should mention that before I was diagnosed with celiac I was diagnosed with diverticulosis. The GI said I had the most extensive case he had ever seen. Normally it is only found on the left descending colon mine was throughout my entire large intestine. On a scope 5 years after diagnosis it was found that the diverticuli were almost totally gone. Did your doctor do an endoscopy at the same time as the colonoscopy? They check for celiac in the small not the large intestine. Have you had a celiac panel done? If not I would get one done and the upper scope. Do not go gluten free until you are done with celiac screening and as soon as the scope is done get on a strict trial of the diet. False negatives are common and you don't need to wait for the scope results to start. Lastly yes celaic can be off and on and for years my worst symptoms seemed to be around the time of my period, at least until they became a daily part of my life.

[gf-soph]

Since then at least, I have what I thought were occasional, but may in fact be cyclical, problems with IBS/bloat/gas, acne, and foot cramps. I AM vitamin D deficient, and probably B12 deficient. I have osteopenia. When I don't have IBS symptoms, life is good.

I learned recently that I have ovarian cysts almost constantly. They come and go, probably with ovulation.

I'm getting tired of the constipation-leading-to-diarrhea-and-gas-so-embarrassing-I-hate-to-go-to-work, and the PAINFUL acne on my neck. The foot cramps may or may not be appearing at the same time. The bloating is unreal. It's really hard for me to see correlations between symptoms and timing (whether they're appearing together) or symptoms and food.

You certainly could have a combination of both. The acne and cylical problems sure do sound hormonal, as do the cysts. The multiple deficiencies is more of a celiac/gluten issue, as is digestive problems. Foot cramps are my first sign of glutening as well. I have heard of hormonal imbalances worsening other symptoms of food intolerance.

Do you have PCOS? Apart from getting the full testing for celiac (if you haven't already) and hormonal panel if you suspect pcos, have you thought about keeping a food and symptom diary? It could be extremely useful in figuring this out, I know it's ben invaluable for me.

It's also a good idea to get the b12 checked out, it can make you very ill if it gets too low. The painful acne on your neck sounds like something I had for quite a while. It turned out not to be acne (which I do get on my face), but folliculitis, an infection of the follicles on my neck, back and scalp. It went away on a low dose antibiotic, and now has stayed away on an elimination diet.

[Emilushka]

It actually takes quite a bit of effort to get a B12 deficiency. You can get it if you have malabsorption for years, if your stomach is malfunctioning for years, or if you aren't eating any animal products at all (vegan diet). So with undiagnosed or untreated Celiac you could totally have a B12 deficiency, but you'd need to have had significant problems for a long time.

Get the B12 checked, but remember that your liver normally stores a 3-year supply of B12 so true deficiency is rare (without years upon years of problems). If you want to replace it, eat animal products and check your multivitamin to see if there's B12 in it. You likely won't need more than that as long as you're not deficient and your absorption is semi-OK.

[mk1]

It actually takes quite a bit of effort to get a B12 deficiency. You can get it if you have malabsorption for years, if your stomach is malfunctioning for years, or if you aren't eating any animal products at all (vegan diet). So with undiagnosed or untreated Celiac you could totally have a B12 deficiency, but you'd need to have had significant problems for a long time.

I'll get it checked again to be sure, but that is probably my biggest fear -- that this has gone undiagnosed for years and has done damage I haven't been aware of. My first definite memory of having concerns about my gut is from 2001, when I underwent a hysterectomy to remove fibroids, in part because I knew I wasn't going to want kids, but in part because my gut issues made me terrified of ovarian cancer. So, for at least 9 years, I've had bloating/diarrhea/gas. If I've been NOT absorbing nutrients for at least that long -- I've got a lot of repairing to do.

[Emilushka]

I'll get it checked again to be sure, but that is probably my biggest fear -- that this has gone undiagnosed for years and has done damage I haven't been aware of. My first definite memory of having concerns about my gut is from 2001, when I underwent a hysterectomy to remove fibroids, in part because I knew I wasn't going to want kids, but in part because my gut issues made me terrified of ovarian cancer. So, for at least 9 years, I've had bloating/diarrhea/gas. If I've been NOT absorbing nutrients for at least that long -- I've got a lot of repairing to do.

At least you're on the right track now. Celiac damage is usually progressive, so hopefully for a while you were still getting some of what you needed. Just focus on moving forward from here. Sublingual B12 if that's your worry - it can't hurt to have a little extra just in case!

I hope you feel better soon.

[Skylark]

And, because I'm lazy and not currently responsible for preparing my own food (my husband is chef/house-husband), is there anything I can TAKE to lessen symptoms, if I cannot change my diet?

There is nothing you can take, and the only way to figure out whether gluten is your problem is to try the diet very strictly. I hope your chef/house husband (gee, where do I get one of those???) is supportive enough to learn how to cook gluten-free for a little while to see if you feel better.

IBS with no clear underlying cause is often gluten intolerance, especially with the osteopenia and B12 deficiency, so it's well worth working with your husband to give the diet a shot.

[gfForLife]

Have you ever had tests for hypothyroidism? Not just TSH but the antibody tests as well? low thyroid can cause a lot of symptoms that overlap with Celiac like GI symptoms, vitamin D deficiency, bone disorders, and other hormones being off balance. It is strongly related to PCOS which you may have with the ovarian cysts?

That's my only thought other than gluten intolerance/Celiac. Try the diet as well as getting your thyroid tested if you haven't already. Good luck.

[rosetapper23]

Have you checked out the possibility that you have PCOS? Do a search on this and see if it sounds familiar (especially the acne). However, I agree with others that you might have a sensitivity to gluten, as well. I would also investigate sensitivities to dairy and soy, too.