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For The Ladies Among Us...

bridgetm

By bridgetm
in Coping with Celiac Disease

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bridgetm Enthusiast
bridgetm
Posted

In September and October I was slammed with what I thought was massive glutening and each time I was out of classes for a week, exhausted and sick as a dog (D followed by C, nausea/vomiting, all-over pain, pure exhaustion-- sleeping hard at night and then "napping" all day, waking only to run to the bathroom). I thought the 4-week cycle I noticed was just my recovery period: 1 week to sleep it off followed by 1 week to ease into eating and activity, another almost-normal week and finally a week of feeling good only to hit a wall and start the cycle all over again. Finally I took a closer look at my food diary and realized that the 1st day of these viscous cycles was actually the 2nd or 3rd day of my actual cycle, as noted by the capital P enclosed by a red circle at the top of the page often explaining the odd food choices over those few days.

In November, I was able to head it off by cutting way back on fatty food as soon as I got my period and eating mainly rice, rice cakes, apple sauce and the usual recovery foods for the first day or two. In December I wasn't as careful, but had no problems; actually, I was always hungry and eating nonstop that time. However, in the first week of second semester, I hit the wall again. P came Tuesday night, nausea came last night and stayed through the morning. I skipped class today and actually fell asleep in my desk chair while reading. The waves of nausea let up after a nap (I took a few swigs of Pepto before I laid down) and after some water and Altoids I was able to eat some rice and then some toast (Ener-G rice loaf). If it weren't for the Bentyl, which I had been trying to cut back on, I'd have the bad D also.

I am 21 and have never had problems during my cycle (rarely even had bad cramps) but since going gluten-free they've been hitting me a little harder and in the last few months VERY hard. Have any of you experienced this? Does the pill help? I had never considered that option before, but this is getting ridiculous.

Bridget

P.S. How is "friend" recognized as a verb now, but "glutening" isn't? We should petition the Oxford Dictionary.

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Rachel W Apprentice
Rachel W
Posted

LOVE the "friend" verb thing lol.

As for the pill, 90% of ladies say it helps. Depending on how much damage you have in your gut you may or may NOT want to try it right at the moment. From personal experience, when my atomach was at its worst,,i was on the pill, and started to spot, then got heavy..for almost 2 months STRAIGHT.. My doc said that since i had so much damage i wasnt absorbing enough of the pill to make it effective, only enough to piss my hormones off and pretty much trick me into spotting for what felt like forever !!

Your body is going through SOOOO SO SOOO many changes now because of of your diet change, the periods will get better :) or , umm, back to normal ( better periods? if there is such a thing)..if you know when your cycle is going to start, try taking advil daily about 3 days before you start, even though it thins your blood, it relaxes the muscles some..If you get serious you can try getting a RX for Levsin, its great for the guts and the baby-maker organs when they decide to cramp up on ya !!! ;)

Rachel W Apprentice
Rachel W
Posted

LOVE the "friend" verb thing lol.

As for the pill, 90% of ladies say it helps. Depending on how much damage you have in your gut you may or may NOT want to try it right at the moment. From personal experience, when my atomach was at its worst,,i was on the pill, and started to spot, then got heavy..for almost 2 months STRAIGHT.. My doc said that since i had so much damage i wasnt absorbing enough of the pill to make it effective, only enough to piss my hormones off and pretty much trick me into spotting for what felt like forever !!

Your body is going through SOOOO SO SOOO many changes now because of of your diet change, the periods will get better :) or , umm, back to normal ( better periods? if there is such a thing)..if you know when your cycle is going to start, try taking advil daily about 3 days before you start, even though it thins your blood, it relaxes the muscles some..If you get serious you can try getting a RX for Levsin, its great for the guts and the baby-maker organs when they decide to cramp up on ya !!! ;)

AND start eating more rice ,and gluten-free bread before you start, cuttiong out fat , meats etc

bridgetm Enthusiast
bridgetm
Posted
  • Author

Thank you both for the tips! Endoscopy didn't show much damage, if any, so my docs are calling all my food intolerance IBS and saying "Well, I guess if it helps stay away from the gluten, but you might not need to. If you want, eat it for two months and we'll test you again." Yeah, right. I know I am not absorbing well just from all the nutrient deficiencies (by the way, what vitamin is good for hair? It would seem I am low on it-- It's falling out from the root in clumps) but since they weren't able to find any obvious damage I really don't know how bad my system is.

My primary doc is not convinced by the IBS diagnosis and is pretty concerned about the obvious malabsorption so I'll give him a call soon to see if he has any tips in lieu of (or in addition to) the pill. Failing that, I'm sure a few of his nurses will have some ideas.

As far as rice and bread goes... I know it's a little late now but I'm imposing the rice, toast and applesauce recovery diet for the next few days. I think I'll just do that for about a week each month since I'm only a little more regular than I was in the first few months of the diet change. What really sucks is that I was just finally becoming regular and predicting accurately when I dropped gluten. Trying to predict it now is about as useful as throwing a dart at the calendar.

Thank you again for you replies! I refer to this forum as the Board of Sanity. When my friends give me that "Seriously? Again??" look/eye-roll, I know I can find something here.

Rachel W Apprentice
Rachel W
Posted

Biotin is great for the hair, as well as omegas..have you had your thyroid checked? Hair loss is commen with thyroid issues :)

lynnelise Apprentice
lynnelise
Posted

LOVE the "friend" verb thing lol.

As for the pill, 90% of ladies say it helps. Depending on how much damage you have in your gut you may or may NOT want to try it right at the moment. From personal experience, when my atomach was at its worst,,i was on the pill, and started to spot, then got heavy..for almost 2 months STRAIGHT.. My doc said that since i had so much damage i wasnt absorbing enough of the pill to make it effective, only enough to piss my hormones off and pretty much trick me into spotting for what felt like forever !!

Your body is going through SOOOO SO SOOO many changes now because of of your diet change, the periods will get better :) or , umm, back to normal ( better periods? if there is such a thing)..if you know when your cycle is going to start, try taking advil daily about 3 days before you start, even though it thins your blood, it relaxes the muscles some..If you get serious you can try getting a RX for Levsin, its great for the guts and the baby-maker organs when they decide to cramp up on ya !!! ;)

How interesting! I had to go off the pill last year because I kept spotting. They kept switching the types and nothing would help. At the end I was having two full periods a month! Of course my doctors were clueless...never mentioned that maybe I wasn't absorbing the pill properly. In fact they argued with me about discontinuing it even though I was bleeding most of the month and had bloodwork showing that my hormones were all out of whack!

Fire Fairy Enthusiast
Fire Fairy
Posted

Before being diagnosed I had the same trouble with the pill and spotting all month long so I gave it up. Since going gluten free my periods have been infinitely milder. They had become very painful with cramps and terrible migraines plus I was losing a lot of blood. Since going gluten free I don't have a lot of fat in my diet so that may well be the difference. I did notice some intestinal upset the one time during PMS when I had a double turkey dog sandwich. (on udi's bread) Of course I've only been gluten free since November so I may not be a good example.

PS can I quote you, "How is "friend" recognized as a verb now, but "glutening" isn't? We should petition the Oxford Dictionary." on my Facebook? It's an excellent point. :)

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bridgetm Enthusiast
bridgetm
Posted
  • Author

PS can I quote you, "How is "friend" recognized as a verb now, but "glutening" isn't? We should petition the Oxford Dictionary." on my Facebook? It's an excellent point. :)

Haha, Go for it! I can't believe some of the words that are now considered "real" while some which make much more sense are still considered "made-up".

I have been feeling much better in the last day or two of eating limited fat. There's definitely something to that.

gf-soph Apprentice
gf-soph
Posted

I just thought I'd add that there can be interactions between hormones and food intolerances. I am on an elimination diet and one of the pieces of advice for people that weren't responding was to go off the pill, as high levels of hormones can exacerbate symptoms of food intolerances. I know you're not on the pill but perhaps you have a preexisiting intolerance and you only get symptoms rearing up at certain hormone levels?

I know it doesn't give you much to work with, but perhaps you could try an elimination diet and see if it helps at that time of the month? A week seems a long time to get knocked out if it's purely hormonal, but very reasonable for a intolerance reaction.

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      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
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