Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

For The Ladies Among Us...

bridgetm

By bridgetm
in Coping with Celiac Disease

Recommended Posts

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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. :)

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Wheatwacked
      - Wheatwacked replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      Supplements for those Diagnosed with Celiac Disease

      Raising you vitamin D will increase absorption of calcium automatically without supplementation of calcium. A high PTH can be caused by low D causing poor calcium absorption; not insuffient calcium intake. With low D your body is not absorbing calcium from your food so it steals it from your bones. Heart has priority over bone. I've been taking 1...
    2. knitty kitty
      - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      results from 13 day gluten challenge - does this mean I can't have celiac?

      @catnapt, Wheat germ has very little gluten in it. Gluten is the carbohydrate storage protein, what the flour is made from, the fluffy part. Just like with beans, there's the baby plant that will germinate ("germ"-inate) if sprouted, and the bean part is the carbohydrate storage protein. Wheat germ is the baby plant inside a kernel of wheat...
    3. knitty kitty
      - knitty kitty replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      Supplements for those Diagnosed with Celiac Disease

      Hello, @asaT, I'm curious to know whether you are taking other B vitamins like Thiamine B1 and Niacin B3. Malabsorption in Celiac disease affects all the water soluble B vitamins and Vitamin C. Thiamine and Niacin are required to produce energy for all the homocysteine lowering reactions provided by Folate, Cobalamine and Pyridoxine. Weight...
    4. Florence Lillian
      - Florence Lillian replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      11

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Hi Jane: You may want to try the D3 I now take. I have reactions to fillers and many additives. Sports Research, it is based in the USA and I have had no bad reactions with this brand. The D3 does have coconut oil but it is non GMO, it is Gluten free, Soy free, Soybean free and Safflower oil free. I have a cupboard full of supplements that did not agree...
    5. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      results from 13 day gluten challenge - does this mean I can't have celiac?

      highly unlikely NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,356
    • Most Online (within 30 mins)
      7,748
    JAGAPG
    Newest Member
    JAGAPG
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Wheatwacked
      Supplements for those Diagnosed with Celiac Disease

      By Wheatwacked · Posted

      Raising you vitamin D will increase absorption of calcium automatically without supplementation of calcium.  A high PTH can be caused by low D causing poor calcium absorption; not insuffient calcium intake.  With low D your body is not absorbing calcium from your food so it steals it from your bones.  Heart has priority over bone. I've been taking 10,000 IU D3 a day since 2015.  My doctor says to continue. To fix my lactose intolerance, lots of lactobacillus from yogurts, and brine fermented pickles and saurkraut and olives.  We lose much of our ability to make lactase endogenosly with maturity but a healthy colony of lactobacillus in our gut excretes lactase in exchange for room and board. The milk protein in grass fed milk does not bother me. It tastes like the milk I grew up on.  If I drink commercial milk I get heartburn at night. Some experts estimate that 90% of us do not eat Adequite Intake of choline.  Beef and eggs are the principle source. Iodine deficiency is a growing concern.  I take 600 mcg a day of Liquid Iodine.  It and NAC have accelerated my healing all over.  Virtually blind in my right eye after starting antihypertensive medication and vision is slowly coming back.  I had to cut out starches because they drove my glucose up into the 200+ range.  I replaced them with Red Bull for the glucose intake with the vitamins, minerals and Taurine needed to process through the mitochodria Krebs Cycle to create ATP.  Went from A1c 13 down to 7.9.  Work in progress. Also take B1,B2,B3,B5,B6. Liquid Iodine, Phosphatidyl Choline, Q10, Selenium, D and DHEA.     Choline supplemented as phosphatidylcholine decreases fasting and postmethionine-loading plasma homocysteine concentrations in healthy men +    
    • knitty kitty
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By knitty kitty · Posted

      @catnapt, Wheat germ has very little gluten in it.  Gluten is  the carbohydrate storage protein, what the flour is made from, the fluffy part.  Just like with beans, there's the baby plant that will germinate  ("germ"-inate) if sprouted, and the bean part is the carbohydrate storage protein.   Wheat germ is the baby plant inside a kernel of wheat, and bran is the protective covering of the kernel.   Little to no gluten there.   Large amounts of lectins are in wheat germ and can cause digestive upsets, but not enough Gluten to provoke antibody production in the small intestines. Luckily you still have time to do a proper gluten challenge (10 grams of gluten per day for a minimum of two weeks) before your next appointment when you can be retested.    
    • knitty kitty
      Supplements for those Diagnosed with Celiac Disease

      By knitty kitty · Posted

      Hello, @asaT, I'm curious to know whether you are taking other B vitamins like Thiamine B1 and Niacin B3.  Malabsorption in Celiac disease affects all the water soluble B vitamins and Vitamin C.  Thiamine and Niacin are required to produce energy for all the homocysteine lowering reactions provided by Folate, Cobalamine and Pyridoxine.   Weight gain with a voracious appetite is something I experienced while malnourished.  It's symptomatic of Thiamine B1 deficiency.   Conversely, some people with thiamine deficiency lose their appetite altogether, and suffer from anorexia.  At different periods on my lifelong journey, I suffered this, too.   When the body doesn't have sufficient thiamine to turn food, especially carbohydrates, into energy (for growth and repair), the body rations what little thiamine it has available, and turns the carbs into fat, and stores it mostly in the abdomen.  Consuming a high carbohydrate diet requires additional thiamine to process the carbs into energy.  Simple carbohydrates (sugar, white rice, etc.) don't contain thiamine, so the body easily depletes its stores of Thiamine processing the carbs into fat.  The digestive system communicates with the brain to keep eating in order to consume more thiamine and other nutrients it's not absorbing.   One can have a subclinical thiamine insufficiency for years.  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so the symptoms can wax and wane mysteriously.  Symptoms of Thiamine insufficiency include stunted growth, chronic fatigue, and Gastrointestinal Beriberi (diarrhea, abdominal pain), heart attack, Alzheimer's, stroke, and cancer.   Thiamine improves bone turnover.  Thiamine insufficiency can also affect the thyroid.  The thyroid is important in bone metabolism.  The thyroid also influences hormones, like estrogen and progesterone, and menopause.  Vitamin D, at optimal levels, can act as a hormone and can influence the thyroid, as well as being important to bone health, and regulating the immune system.  Vitamin A is important to bone health, too, and is necessary for intestinal health, as well.   I don't do dairy because I react to Casein, the protein in dairy that resembles gluten and causes a reaction the same as if I'd been exposed to gluten, including high tTg IgA.  I found adding mineral water containing calcium and other minerals helpful in increasing my calcium intake.   Malabsorption of Celiac affects all the vitamins and minerals.  I do hope you'll talk to your doctor and dietician about supplementing all eight B vitamins and the four fat soluble vitamins because they all work together interconnectedly.  
    • Florence Lillian
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Florence Lillian · Posted

      Hi Jane: You may want to try the D3 I now take. I have reactions to fillers and many additives. Sports Research, it is based in the USA and I have had no bad reactions with this brand. The D3 does have coconut oil but it is non GMO, it is Gluten free, Soy free, Soybean free and Safflower oil free.  I have a cupboard full of supplements that did not agree with me -  I just keep trying and have finally settled on Sports Research. I take NAKA Women's Multi full spectrum, and have not felt sick after taking 2 capsules per day -  it is a Canadian company. I buy both from Amazon. I wish you well in your searching, I know how discouraging it all is. Florence.  
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      highly unlikely  NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean ground turkey but not much) I was off dairy for years but recently had to add back plain yogurt to meet calcium needs that I am not allowed to get from supplements (I have not had any problem with the yogurt)   I eat almost no processed foods. I don't eat out. almost everything I eat, I cook myself I am going to keep a food diary but to be honest, I already know that it's wheat products and also barley that are the problem, which is why I gradually stopped eating and buying them. When I was eating them, like back in early 2024, when I was in the middle of moving and ate out (always had bread or toast or rolls or a sub or pizza) I felt terrible but at that time was so busy and exhausted that I never stopped to think it was the food. Once I was in my new place, I continued to have bread from time to time and had such horrible joint pain that I was preparing for 2 total knee replacements as well as one hip! The surgery could not go forward as I was (and still am) actively losing calcium from my bones. That problem has yet to be properly diagnosed and treated   anyway over time I realized that I felt better when I stopped eating bread. Back at least 3 yrs ago I noticed that regular pasta made me sick so I switched to brown rice pasta and even though it costs a lot more, I really like it.   so gradually I just stopped buying and eating foods with gluten. I stopped getting raisin bran when I was constipated because it made me bloated and it didn't help the constipation any more (used to be a sure bet that it would in the past)   I made cookies and brownies using beans and rolled oats and dates and tahini and I LOVE them and have zero issues eating those I eat 1 or more cans of beans per day easily can eat a pound of broccoli - no problem! Brussels sprouts the same thing.   so yeh it's bread and related foods that are clearly the problem  there is zero doubt in my mind    
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.