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

Recommended Posts

bridgetm Enthusiast

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

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

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

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

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

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

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

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

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.

  • 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. - xxnonamexx posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

    2. - cristiana replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

    3. - trents replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

    4. - Scott Adams replied to Aretaeus Cappadocia's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

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

      nothing has changed

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,190
    • Most Online (within 30 mins)
      7,748

    Atl222
    Newest Member
    Atl222
    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

    • xxnonamexx
      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    • cristiana
      Hi @Atl222 As @trents points out, there could be many reasons for this biopsy result.  I am interested to know, is your gastroenterologist concerned?  Also, are your blood tests showing steady improvement over the years? I remember when I had my last biopsy, several years after diagnosis, mine came back with with raised lymphocytes but no villous damage, too! In my own case, my consultant wasn't remotely concerned - in fact, he said I might still get this result even if all I ever did was eat nothing but rice and water.   My coeliac blood tests were still steadily improving, albeit slowly, which was reassuring.
    • trents
      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease or gluten/oats exposure. See attachment. But you might try eliminating oats to start with and possibly dairy for a few months and then seek another endoscopy/biopsy to see if there was a reduction in lymphocyte counts. 
    • Scott Adams
      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especially since Eden has a long-standing reputation for transparency. While the lack of gluten labeling can understandably give pause, manufacturer confirmation like this is often what people rely on for traditionally fermented products. As always, trusting your body after trying it is reasonable, but based on the information you gathered, your conclusion makes sense.
    • Scott Adams
      Seven months can still be early in celiac healing, especially if you were mostly asymptomatic to begin with—symptoms like low iron, vitamin D deficiency, nail changes, and hair issues often take much longer to improve because the gut needs time to recover before absorption normalizes. A tTG-IgA of 69 is not “low” in terms of immune activity, and it can take 12–24 months (sometimes longer) for antibodies and the intestinal lining to fully heal, particularly in teens and young adults. Eating gluten again to “test” things isn’t recommended and won’t give you clear answers—it’s far more likely to cause harm than clarity. Weight not changing is also very common in celiac and doesn’t rule anything out. Please know that your frustration and sadness matter; this adjustment is hard, and feeling stuck can really affect mental health. You deserve support, and if you can, reaching out to a GI dietitian or mental health professional familiar with chronic illness could really help you through this phase. This study indicates that a majority of celiacs don't recover until 5 years after diagnosis and starting a gluten-free diet: Mucosal recovery and mortality in adults with celiac disease after treatment with a gluten-free diet However, it's also possible that what the study really shows is the difficulty in maintaining a 100% gluten-free diet. I suspect that if you looked closely at the diets of those who did not recover within 2 years might be that their diets were not 100% gluten-free. Perhaps they ate out more often, or didn't understand all of the hidden ingredients where gluten can hide. Either way, it shows how difficult recovery from celiac disease can be for most people. According to this study: This article explores other causes of flattened villi:    
×
×
  • 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.