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

De-Swelling


stellagogo

Recommended Posts

stellagogo Rookie

i've been gluten free (and now dairy free) for about 2 weeks now. i have so many questions. sorry.

1. i havent lost much weight (gluten makes me gain) but i feel like i'm smaller, less swollen. has anyone experienced this?

2. i am more tired than i've ever been in my life. is this because my body is no longer pumping out large amounts of stress hormones to deal with the gluten? is it the elimination of the drug-like effect of gluten and dairy? (today i took a super-long nap -- i NEVER can nap -- im just SO fatigued. )

3. the elimination of dairy seems to be causing even more [what seem like] withdrawal symptoms. i thought the dairy thing was more about gas/bloating/digestive symptoms, but for me the fact that i craved it was a bad sign. can dairy cause the same effects as gluten...the symptoms that are not just digestive?

4. i feel like i'm fighting cravings a lot less. i'm eating much less (not really enough probably) and i think i'm hungry, but i kind of have to force myself to eat, rather than fight the cravings all day. anybody know what the heck i'm talking about?

i've been about 95% gluten-free for awhile, but being 100% gluten-free has caused a world of changes. it's overwhelming. a part of me feels really good, like there may be a light at the end of this tunnel, but i also feel like a depressed drug-detoxing zombie.


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



Celiac.com Sponsor (A8-M):



AVR1962 Collaborator

1. i havent lost much weight (gluten makes me gain) but i feel like i'm smaller, less swollen. has anyone experienced this?

2. i am more tired than i've ever been in my life. is this because my body is no longer pumping out large amounts of stress hormones to deal with the gluten? is it the elimination of the drug-like effect of gluten and dairy? (today i took a super-long nap -- i NEVER can nap -- im just SO fatigued. )

3. the elimination of dairy seems to be causing even more [what seem like] withdrawal symptoms. i thought the dairy thing was more about gas/bloating/digestive symptoms, but for me the fact that i craved it was a bad sign. can dairy cause the same effects as gluten...the symptoms that are not just digestive?

4. i feel like i'm fighting cravings a lot less. i'm eating much less (not really enough probably) and i think i'm hungry, but i kind of have to force myself to eat, rather than fight the cravings all day. anybody know what the heck i'm talking about?

Yes, I know what you are talking about....I also have not lost weight (gluten free since April) but my stomach has lost size, my hips fit in my pants better. I also went dairy free for 2 months....determined dairy was also a problem. I know the gluten and dairy digest differently and while dairy can cause the inmafmous digestive side effects much like a gluten intolerance it is my knowledge that it does not affect the cilia like glutens do. Continued consumption associated with diahrea could very well deplete the body of needed nutrients so in both situatiuons it is very important to protect your system. For me my gluten side effects were much more than digestive issues so there does seem to be a difference for me.

Because I was not replacing any of my glutens with gluten free products at first and was off both dairy and gluten I found myself hungry. I had to watch that I was not taking in too much meat as the meat if I took in more than about 6 oz would just sit on my stomach heavy. So I was eating alot of fruits and veggies til I understood what was safe and what was not. Trust me I had to get real creative with salads and cooked veggies.

I thought going off wheat was going to be hard for me but it amazingly was not. Sure every once and awhile I'll see someone with a slice of pizza and think that I wish I could have a slice but I know it will make me sick so that is a good deterent. I did crave cheese and at first when I started putting dairy back in my diet I went with vegan products, started on a daily supplement to protect the dairy intolerance (doubled up on it) and ate little bits. Oddly enough as much as I thought I'd miss ice cream I do not. I do eat cheese and with my pills I have no issue but I avoid dairy other than that. And I have experiemnted witgh baking and buying gluten free products and my system seems to be making the adjustments and I am feeling more comfortable. I did alot of experimenting to figure what would work for me.

stellagogo Rookie

Yes, I know what you are talking about....I also have not lost weight (gluten free since April) but my stomach has lost size, my hips fit in my pants better. I also went dairy free for 2 months....determined dairy was also a problem. I know the gluten and dairy digest differently and while dairy can cause the inmafmous digestive side effects much like a gluten intolerance it is my knowledge that it does not affect the cilia like glutens do. Continued consumption associated with diahrea could very well deplete the body of needed nutrients so in both situatiuons it is very important to protect your system. For me my gluten side effects were much more than digestive issues so there does seem to be a difference for me.

Because I was not replacing any of my glutens with gluten free products at first and was off both dairy and gluten I found myself hungry. I had to watch that I was not taking in too much meat as the meat if I took in more than about 6 oz would just sit on my stomach heavy. So I was eating alot of fruits and veggies til I understood what was safe and what was not. Trust me I had to get real creative with salads and cooked veggies.

I thought going off wheat was going to be hard for me but it amazingly was not. Sure every once and awhile I'll see someone with a slice of pizza and think that I wish I could have a slice but I know it will make me sick so that is a good deterent. I did crave cheese and at first when I started putting dairy back in my diet I went with vegan products, started on a daily supplement to protect the dairy intolerance (doubled up on it) and ate little bits. Oddly enough as much as I thought I'd miss ice cream I do not. I do eat cheese and with my pills I have no issue but I avoid dairy other than that. And I have experiemnted witgh baking and buying gluten free products and my system seems to be making the adjustments and I am feeling more comfortable. I did alot of experimenting to figure what would work for me.

avr

thank you for responding! you make me feel so much less nuts. i'm also doing this right now by eliminating all grains and sticking with lean meats, fruits, veggies, nuts. and some dark chocolate. it feels good but i hope i can add back in some goat cheese, yogurt, gluten-free breads at some point. after about a week gluten-free i started to have some bellyaches (which, ironically, is unusual for me--my symptoms have been less of the typical digestive type), so that's why i eliminated dairy. plus i was thinking i was maybe reacting to it since i was craving it. maybe i'm just being overly cautious. i do wonder if dairy can cause "silent" reactions like the systemic inflammation gluten caused for me...so much less obvious than the digestive issues.

i've been mostly gluten free for almost a year, but totally eliminating it is making me feel so....weird.

it is kind of like an experiment, i guess.

eatmeat4good Enthusiast

casein in dairy can also have the opiate effect that gluten has...I resisted that thought in the beginning...I wanted to live on cheese if I couldn't live on bread :ph34r: but neither one are good for me at all. I sure do hope to be one of the ones who can add dairy back someday. I test it once in a while and every time with this result: :blink::ph34r: Darn it. I hope you feel better soon. You are right to eat mostly meat, fruit, vegeatables and nuts....and oh yeah! Chocolate! Just be careful about the chocolate that it is also gluten free and not made on shared lines. That gets some people.

AVR1962 Collaborator

avr

thank you for responding! you make me feel so much less nuts. i'm also doing this right now by eliminating all grains and sticking with lean meats, fruits, veggies, nuts. and some dark chocolate. it feels good but i hope i can add back in some goat cheese, yogurt, gluten-free breads at some point. i wonder if dairy can cause "silent" reactions like the systemic inflammation gluten caused for me...so much less obvious than the digestive issues. it is kind of like an experiment, i guess.

Yes, definately an experiment to see what works for you. If dairy is making your belly feel sick I think you are in the right track by taking it out for now. One thing I noticed too when I was eating mostly meat, veggies and fruit is that if I had too much meat (over 6 oz) my stomach would not feel well, almost like it was too much, too hard to digest or just was not wanting to move. So I really watched my portion sizes and because I was eating more meat I was afraid my chloresterol would go sky high so I added gluten-free flax seed to my diet. I don't know if dairy can cause inflammation like gltuens or not. I have had inflammation issues with glutens and found there's lots of inflamatory and anti-inflammatory foods I found thru searches. Changing some of my fruits and veggies made a big difference with that, like cutting down on the avocados and bananas and replacing it with pineapple and watermelon. You'd be surprised how good watermelon is for you.

stellagogo Rookie

you guys are awesome.

casein must have a similar opiate effect. i was feeling really good for the first week or so of gluten-free (i'd been MOSTLY gluten for awhile), but i have never been so depressed in my life since going dairy free.

i am just sitting staring at walls and sleeping.

i dont know what i'm gonna do if this doesnt get better.

pricklypear1971 Community Regular

I am so right there with you. I have been gluten-free for about 2 months. At first I gelt great (after the first week of raging ups and downs), except my rash (probably DH) isn't gone. I think I got glutened last week and it's been up and down every day. I slept for 12 hours (of course, I was sleeping 5 during gluteningand antibiotic reaction) last night and I want to crawl back in bed still. I am also starting to not want to eat, every timeI look at food I wonder "what's next?", even if it's something that should be safe.

This sucks. I'm at the point where I just want to eat a few pieces of meat, a few nuts, a piece of fruit, then crawl back in bed. And tons of water...I can't get enough water...

I am so sick of being in pain from that rash. I swear, it gives me chills when the blisters start popping. I have to crawl under blankets and I still shiver. The itch is that worst. The urge to scratch is unbelievable, and I swear the satisfaction from scratching it is up there with chocolate and sex.

I'm on supplements, and I know it helps. If you aren't on a multivitamin start one, that could help your energy.


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



Celiac.com Sponsor (A8-M):



stellagogo Rookie

prickly..

i am so sorry you are going thru this but it really makes me feel better to know i'm not alone. you sound just like me...i am annoyed with eating and nothing feels safe and it all just seems too difficult. ive been depressed all my life, but this is worse than i remember, ever. i went to sleep last night at 9:30 (i NEVER go to sleep that early but i just dont want to do anything but sleep) and got up this morning at 7:30 sick with a stomach bug (great). so being super sick all morning beat me up and i just feel that much more like i've been hit by a truck.

i dont know if this is depression, a grieving process, withdrawal...or what. but everything in its wake is being destroyed, including my relationship with my boyfriend. and i care and i'm scared but i cant even bring myself to do anything about it.

maybe it's all the anger from years of telling people and doctors there is something wrong with me and being told i'm just delusional.

i really feel like i've been hit by a truck.

sending you good thoughts...i hope we both feel better soon.

stellagogo Rookie

oh i wanted to mention also that i've come to recognize extreme thirst as a sign of glutening. i get this insatiable thirst that i can down glass after glass of water ... it's bizarre. and i retain it...i dont have to pee much...weird! i've never heard of anyone else with this symptom, but i am pretty sure it has to do with gluten, because since i've been strictly gluten-free, the thirst is gone, and i kinda have to force the fluids. anyway hopefully your body just needing the water for detoxing.

pricklypear1971 Community Regular

I was terribly depressed until I started thyroid supplementation, about 6 years ago. Do you have Hashoimotos antibodies? Gluten and thyroid problems are frequently linked; in Hashis its thought gluten causes Hashis. Of course, that was news to me recently.

Living with a chronic illness is very difficult, and I'm sure forging a relationship in the midst of all of it is more so. Stay off the gluten, moisturize like crazy, try to rest, and plan a short, easy date with your bf. Maybe a relaxing short date is what y'all need. I'm sure YOU could use tome enjoyment!

One side note - after my son was born he was milk and soy intolerant..since I was breast feeding so was I. The first 4 days were awful - I was in the bathroom with nonstop diarrhea. Smart people informed me I was detoxing. It sucked. Sometimes I think about it and want to pop him on the bottom :).

stellagogo Rookie

I was terribly depressed until I started thyroid supplementation, about 6 years ago. Do you have Hashoimotos antibodies? Gluten and thyroid problems are frequently linked; in Hashis its thought gluten causes Hashis. Of course, that was news to me recently.

Living with a chronic illness is very difficult, and I'm sure forging a relationship in the midst of all of it is more so. Stay off the gluten, moisturize like crazy, try to rest, and plan a short, easy date with your bf. Maybe a relaxing short date is what y'all need. I'm sure YOU could use tome enjoyment!

One side note - after my son was born he was milk and soy intolerant..since I was breast feeding so was I. The first 4 days were awful - I was in the bathroom with nonstop diarrhea. Smart people informed me I was detoxing. It sucked. Sometimes I think about it and want to pop him on the bottom :).

youre an angel. it's so nice to hear from someone who understands.

we are so much alike--i have hashimoto's too. i'm on a t4/t3 combination rx but my dr wants to see if my antibodies go down now that i'm gluten free (i'm surprised they were still as high as they were seeing as how i've been 98% gluten-free for awhile) before upping my medication. he wants my adrenals to heal so that my body can respond better to the medication.

i just feel like i've totally crashed since eliminating the dairy...it's so weird! i have never been a big milk drinker, but i do enjoy yogurt and cheese. i dont even want to think that i'll never be able to have these things again :( i wonder if casein has been keeping my antibodies high...if i'm having a strong reaction to it like gluten. i still dont understand how it all works. i thought it was just a matter of temporary dairy intolerance due to damaged villi from gluten. maybe it's more than that.

my bf doesnt understand...who could? i find myself feeling so worthless right now and i always push people away when i'm depressed. youre right though. i could REALLY use some distraction.

so i wonder if the diarrhea/vomiting i had this morning was detox? i cant believe how strongly i'm reacting.

hope youre feeling better, at least a little. i'm going back to bed. i cant keep these heavy eyes open.

eatmeat4good Enthusiast

I am so right there with you. I have been gluten-free for about 2 months. At first I gelt great (after the first week of raging ups and downs), except my rash (probably DH) isn't gone. I think I got glutened last week and it's been up and down every day. I slept for 12 hours (of course, I was sleeping 5 during gluteningand antibiotic reaction) last night and I want to crawl back in bed still. I am also starting to not want to eat, every timeI look at food I wonder "what's next?", even if it's something that should be safe.

This sucks. I'm at the point where I just want to eat a few pieces of meat, a few nuts, a piece of fruit, then crawl back in bed. And tons of water...I can't get enough water...

I am so sick of being in pain from that rash. I swear, it gives me chills when the blisters start popping. I have to crawl under blankets and I still shiver. The itch is that worst. The urge to scratch is unbelievable, and I swear the satisfaction from scratching it is up there with chocolate and sex.

I'm on supplements, and I know it helps. If you aren't on a multivitamin start one, that could help your energy.

be really careful with multi-vitaimin. Almost all multivitamins contain iodine and that may be what keeps your rash going. I had to limit iodine for a few months to get things to calm down. Salty foods, iodized salt and iodine in multi-vitamins and shellfish are all things that can aggravate the rash...sorry you feel so bad. I just wanted to mention the iodine in multi's in case you didn't know.

pricklypear1971 Community Regular

Of you feel like crap, and you know your thyroid meds relieve those symptoms, beat your doc over the head til s/he temporarily ups it.

Geez! Why make you miserable??

Make sure you're getting enough good food, and take a supplement! I am taking biogenesis adrenal support and professional botanicals female gland balance, and using progesterone cream, and vitanica Women's symmetry multis. I also take enzymedica digest gold and a probiotic.

My adrenals are shot, and my liver is operating sub optimally. The gland support/ adrenals are temporary and I will hopefully be off in 6 months. My hormones are suboptimal, also.

Evidently, the gluten has taken a toll, as well as the corticosteroids.

Oh yeah, stay off hard liquor. Apple cider and wine is ok for me right now but the hard stuff kills me.

Sleep well!

pricklypear1971 Community Regular

Thanks eatmeat4good, yes I read that. Mine is low iodine and I'm waiting to hear back from my dr. for a no-iodine reco. My rash went away last week, till I got glutened so I dont think I'm as sensitive as most...but I'm not eating other high iodine food just in case.

I really notice my energy drops if I don't take them...worth the risk right now.

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. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

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

    2. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

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

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

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

    4. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

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

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

    • Total Members
      133,329
    • Most Online (within 30 mins)
      7,748

    klkarius
    Newest Member
    klkarius
    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

    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
×
×
  • 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.