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

Getting Impatient With Improvements...


jabberwife

Recommended Posts

jabberwife Explorer

I've been gluten-free for a month. Better, and did one gluten challenge a week and a half ago, to see for sure that this is the root of my problems. It is...believe me! But I'm still dealing with C (I'll go maybe once or twice a week, tops) and gas/bloating, flatulence (which is nice and embarrassing) even when I eat something I KNOW is gluten free. I hardly eat out anymore, and I've checked labels super-carefully for hidden gluten and the like. I am still waiting for my Enterolab results, but why am I still having these issues? I eat enough fiber. It's getting old! Any ideas? I'm going to try dairy-free and artificial sweetener-free for a while (thinking maybe my Diet Coke causes some issues) but I know that typically when I eat a large amount of dairy at once currently I don't have any more issues than any other time. Arrrgh! Anyone have ideas? Am I just being impatient at letting my body heal itself from the gluten challenge and the gluten eating lifestyle? I was not as severely ill as many of you when I went gluten-free.


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



Celiac.com Sponsor (A8-M):



Shiba Newbie
I've been gluten-free for a month. Better, and did one gluten challenge a week and a half ago, to see for sure that this is the root of my problems. It is...believe me! But I'm still dealing with C (I'll go maybe once or twice a week, tops) and gas/bloating, flatulence (which is nice and embarrassing) even when I eat something I KNOW is gluten free. I hardly eat out anymore, and I've checked labels super-carefully for hidden gluten and the like. I am still waiting for my Enterolab results, but why am I still having these issues? I eat enough fiber. It's getting old! Any ideas? I'm going to try dairy-free and artificial sweetener-free for a while (thinking maybe my Diet Coke causes some issues) but I know that typically when I eat a large amount of dairy at once currently I don't have any more issues than any other time. Arrrgh! Anyone have ideas? Am I just being impatient at letting my body heal itself from the gluten challenge and the gluten eating lifestyle? I was not as severely ill as many of you when I went gluten-free.

Umm, drinking any coke is a bad idea. Celiac often leads to osteoporosis, and coke is full of phosphoric acid, which leaches calcium. THat's why even diet coke is limited in most schools here. It's particularly not recommenneded for teenage girls, as they need to be laying down calcium, not destroying it...

Vladimir Gluten Newbie

Have you started a food diary? I keep a food diary that tracks: the types of food I eat; the time that I eat it; any sympotoms I may get; and, the time of those symptoms.

Perhaps this will help you to figure out what's going on.

ArtGirl Enthusiast

I can surely relate. After three weeks gluten-free I started having other allergy symptoms and the D has not truly cleared up (although the violent symptoms have). Right now my skin is itchy, welts up if scratchd, and I am only a thin line away from breaking out in hives. I'm taking benedryl every night and that helps the symptoms (puts me to sleep, too), but don't know yet what is the culprit. Have removed dairy, corn, and now eggs from my diet. Next will be potatoes and then I don't know what else after that. My assumption is that after another month or two some of this will settle down as my gut heals. At least, that's the working theory for now.

From what I've read on this forum, some people recover quickly, others take much more time. I guess I'm in the latter group. Darn!

mmaccartney Explorer
I've been gluten-free for a month. Better, and did one gluten challenge a week and a half ago, to see for sure that this is the root of my problems. It is...believe me! But I'm still dealing with C (I'll go maybe once or twice a week, tops) and gas/bloating, flatulence (which is nice and embarrassing) even when I eat something I KNOW is gluten free. I hardly eat out anymore, and I've checked labels super-carefully for hidden gluten and the like. I am still waiting for my Enterolab results, but why am I still having these issues? I eat enough fiber. It's getting old! Any ideas? I'm going to try dairy-free and artificial sweetener-free for a while (thinking maybe my Diet Coke causes some issues) but I know that typically when I eat a large amount of dairy at once currently I don't have any more issues than any other time. Arrrgh! Anyone have ideas? Am I just being impatient at letting my body heal itself from the gluten challenge and the gluten eating lifestyle? I was not as severely ill as many of you when I went gluten-free.

Give it some time. You should feel better after one month, but not 100%. For me it took about 6-9 months before I was back to about 90%. After one month I was still getting contaminated as I didn't have the diet down as well as I do now, and I didn't know I was intolerant to casein, which is why a food diary is highly recommended; there are probably more foods that you are intolerant to that you don't know about.

And, don't forget cross contamination!!! If you are highly sensitive like me then very little bits of gluten can set your off. I've reacted to McDonalds fries, Amys gluten-free products, and other items that are gluten-free even ones that have been tested for gluten. For example, I eat Soy Delicous ice cream. They make a few flavors in pint size containers these are all gluten-free, and I've not had a problem. They also make smaller sizes, special flavors like cherry vanilla, and one with brownies. I reacted to the cherry vanilla which is gluten-free, and is routinely tested for gluten. I chalked it up to cross contamination as the factory lines are probably shared for the smaller sizes (where the larger probably has dedicated lines due to higher demand for common flavors like chocolate and vanilla), and the level was below the 200ppm testing capability.

For some of us highly sensitive label checking alone is not enough; I contact the companies and inquire as to their manufactoring processes so that I can understand the potential for cross contamination as well.

Nancym Enthusiast

I had to give up the dairy too. :( Your enterolab results might indicate that you should as well.

Are you using any artificial sweeteners with sugar alcohols? Anything ending in "ol" like Malitol or Sorbitol. Those produce horrible gas because the molecules aren't digestable and they go to the intestines where bacteria break it down, kind of like beans, only far, far worse.

evie Rookie

[quote name='jabberwife' date='Jul 18 2006, 07:46 AM'

and artificial sweetener-free for a while (thinking maybe my Diet Coke causes some issues)

Could be coke or anything with carbonation causing gas. I t may be too soon to expect much change too.

Some Dr.s have us go off dairy too, mine did. I am thinking about going back on for trial since I am nearing 6 months. Journaling is a good idea, helps you figure out problems, can't trust memories (most of us can't). <_< . Takes a lot of patience put it pays off!! :) evie


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



Celiac.com Sponsor (A8-M):



eeyor-fan Contributor
I've been gluten-free for a month. Better, and did one gluten challenge a week and a half ago, to see for sure that this is the root of my problems. It is...believe me! But I'm still dealing with C (I'll go maybe once or twice a week, tops) and gas/bloating, flatulence (which is nice and embarrassing) even when I eat something I KNOW is gluten free. I hardly eat out anymore, and I've checked labels super-carefully for hidden gluten and the like. I am still waiting for my Enterolab results, but why am I still having these issues? I eat enough fiber. It's getting old! Any ideas? I'm going to try dairy-free and artificial sweetener-free for a while (thinking maybe my Diet Coke causes some issues) but I know that typically when I eat a large amount of dairy at once currently I don't have any more issues than any other time. Arrrgh! Anyone have ideas? Am I just being impatient at letting my body heal itself from the gluten challenge and the gluten eating lifestyle? I was not as severely ill as many of you when I went gluten-free.

Is your dish soap, facial soap, lipstick etc gluten-free?? You could still be injesting gluten without knowing it.

taz sharratt Enthusiast
I've been gluten-free for a month. Better, and did one gluten challenge a week and a half ago, to see for sure that this is the root of my problems. It is...believe me! But I'm still dealing with C (I'll go maybe once or twice a week, tops) and gas/bloating, flatulence (which is nice and embarrassing) even when I eat something I KNOW is gluten free. I hardly eat out anymore, and I've checked labels super-carefully for hidden gluten and the like. I am still waiting for my Enterolab results, but why am I still having these issues? I eat enough fiber. It's getting old! Any ideas? I'm going to try dairy-free and artificial sweetener-free for a while (thinking maybe my Diet Coke causes some issues) but I know that typically when I eat a large amount of dairy at once currently I don't have any more issues than any other time. Arrrgh! Anyone have ideas? Am I just being impatient at letting my body heal itself from the gluten challenge and the gluten eating lifestyle? I was not as severely ill as many of you when I went gluten-free.

i fell for you, it can be very frustrateing when you are not getting any better. ive been gluten-free since mid may and altho initialy i did feel a whole lot better i fell back to square 1. there has to be another intolerace which is makeing my tummy bloat and gas and im still getting bad C. ive started a food diary, what you said about coke, i too drink it i love coke i probably drink 1 can every day, im also dary intolearnt so the osteoperosis thing is a real worry, ive heard of a lot of people who are celiac are often dairy intolerant, it often goes together, give going dairy free a try.

jabberwife Explorer

I've checked all cosmetics, so I know it's not that. I do chew Orbit, which has sorbitol. Hmm...anyone know a good chewing gum that's not gonna do that to me? I'm horribly addicted to gum (used to smoke back in the day, quit 2 years ago) and so I'd like to find something else that's better for me.

I suppose I should log my food. I'm just so ready for Enterolab to hurry up! It's only been 2 weeks though since they received my samples.

Artgirl--I'm sorry to hear you're itching so bad, but in a way, glad to know I'm not alone in that. I have had itching with no visible symptoms too...on my legs only, mostly...and it welts up awful if I scratch. It's gotten better since being gluten-free, but funny thing is, when I play soccer, it gets worse for a day or two. Benadryl and hydrocortisone only barely help. I wonder what it is that causes me to do that.

hez Enthusiast

It took a good 6 months for the "d" to go away and have normal bm. I stopped drinking milk during that time because it made me sick. I have been gluten-free for over a year and I can drink milk again without any problems. I think my villi just needed to heal. It really did seem to take a long time for me to feel better.

Hez

ArtGirl Enthusiast
rtgirl--I'm sorry to hear you're itching so bad, but in a way, glad to know I'm not alone in that.

Me, too. In all the reading I've done on the forum, I haven't come across anyone mentioning itchy skin. If you ever find out what's causing this, let me know. I'm hoping that with healing this will diminish and eventually go away.

jaten Enthusiast

I discovered soy and dairy intolerances almost immediately after going gluten-free. Now, 7 mos gluten-free, I am able to add a little dairy back into my diet with no problems. I still largely avoid soy, but will try to add that back at some point too. Do look for patterns that point to other intolerances, and as everyone told me when I first joined this forum....give your body time to heal. I even had a huge backwards step at 3 or 4 mos, but that seems not unusual at any rate. Give it time. Eat "whole" foods vs. a lot of processed foods. Identify other intolerances. Be strict in avoiding gluten. Your body will come around.

jenvan Collaborator

jabberwife-

I also have dairy problems...but one month not long at all on the gluten-free diet. Yes, some individuals notice improvements at this point, but a fair amount of us don't. It can take months to really notice improvement...it did in my case. I noticed bm type improvement after a few months, but it has taken quite a bit longer to notice an improvement in my energy levels. In the beginning, the diet takes a lot of discipline, esp for those who notice little changes. Stick with it and don't give up! I have 2 big recommendations for you, as I also had C...and it has taken me a while to really improve in that area. #1-Start a food/symptom journal. This will help you pinpoint foods and connect specific ones to symptoms. That is the way I figured out I can not tolerate dairy. Dairy is a very constipating to me. Soy can also be that way--it causes gas for lots of folks too. #2-Fiber supplement like psyllium. You may need a jump start to get your system going and help pull out some of the gunk that has been moving too slowly through your system. I recommend psyllium b/c it is natural and does a great job of cleaning on its way through your system. My C has improved much after eliminating gluten and dairy, but I still need a *boost* every once in a while. For me, occasional psyllium does the trick. Hope your improvement picks up pace--but don't lost heart yet!

BeckyW Contributor
jabberwife-

I also have dairy problems...but one month not long at all on the gluten-free diet. Yes, some individuals notice improvements at this point, but a fair amount of us don't. It can take months to really notice improvement...it did in my case. I noticed bm type improvement after a few months, but it has taken quite a bit longer to notice an improvement in my energy levels. In the beginning, the diet takes a lot of discipline, esp for those who notice little changes. Stick with it and don't give up! I have 2 big recommendations for you, as I also had C...and it has taken me a while to really improve in that area. #1-Start a food/symptom journal. This will help you pinpoint foods and connect specific ones to symptoms. That is the way I figured out I can not tolerate dairy. Dairy is a very constipating to me. Soy can also be that way--it causes gas for lots of folks too. #2-Fiber supplement like psyllium. You may need a jump start to get your system going and help pull out some of the gunk that has been moving too slowly through your system. I recommend psyllium b/c it is natural and does a great job of cleaning on its way through your system. My C has improved much after eliminating gluten and dairy, but I still need a *boost* every once in a while. For me, occasional psyllium does the trick. Hope your improvement picks up pace--but don't lost heart yet!

Just wondering...what is psyllium? Does it have a brand name? Is this something you can take on a regular basis to help keep the system regular?

Thank you!

Rice Cakes Newbie
I'm taking benedryl every night and that helps the symptoms (puts me to sleep, too), but don't know yet what is the culprit.

Diphenhydramine (Benadryl) is not something I would recommend taking frequently - after doing so to aid sleep, I found it was making me very ill and I will no longer use it for anything.

jenvan Collaborator
Just wondering...what is psyllium? Does it have a brand name? Is this something you can take on a regular basis to help keep the system regular?

Thank you!

Psyllium is basically a type of natural plant fiber, derived from seeds. It is used as a supplement and is often part of laxatives and stool softners. Unlike a laxative or stool softner though, psyllium by itself is a good, non-medicinal treatment for constipation. (Laxatives, medications are not safe for long periods of time...and IMO, don't absorb and pull out old stool like a bulking fiber supplement). Read the description below for more info. It typically comes in a powder (I don't recommend the pills) and you mix it in juice (in water it doesn't taste so good). You can take it once or twice a day. I usually take it in the morning. There are different brands and formulas, so you need to verify what you get is gluten-free. I have found one brand that myself and my family love. I know some folks have trouble with gas etc. taking psyllium, but this is gentle and hasn't caused an issues for us. It can take some experimenting to find the right amount. I take two rounded teaspoons in a full (8ish oz) of juice. Always follow this with a full glass of water. The psyllium forms a gel that absorbs/carries stool and liquid out. The brand we get has hibiscus in it also, which really seems to help with the "process." Some will recommend taking slippery elm, but that hasn't worked so great for us. Here is what we get: Open Original Shared Link We buy it from Nature's Sunshine online, but as part of a club. You could buy it online or if you have a natural food store, they could order it too. You can find other brands, this is just our favorite and I know its gluten-free. Remember to ck on what you get. If you have any other ?s, let me know!

Psyllium is produced mainly for its mucilage content, which is highest in P. ovata. Mucilage describes a group of clear, colorless, gelling agents derived from plants. The mucilage obtained from psyllium comes from the seed coat. Mucilage is obtained by mechanical milling/grinding of the outer layer of the seed. Mucilage yield amounts to approximately 25% or more (by weight) of the total seed yield. Plantago seed mucilage is often referred to as husk or psyllium husk. The milled seed mucilage is a white fibrous material that is hydrophilic (water-loving). Upon absorbing water the clear colorless mucilaginous gel that forms increases in volume by ten-fold or more. Psyllium is mainly used as a dietary fiber, which is not digested by action in the small intestine. The purely mechanical action of psyllium mucilage absorbs excess water while stimulating normal bowel elimination. Although its main use has been as a laxative, it is more appropriately termed a true dietary fiber.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,855
    • Most Online (within 30 mins)
      7,748

    Tara M
    Newest Member
    Tara M
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
    • Jillian83
      Hi, I was recently diagnosed with Celiac and dermatitis herpetiformis after years of suffering without answers. I lost my mind. I lost my job. I lost so much time. I lost Me. Conventional doctors are opulent come near me and the one who did sat across the room, misdiagnosed me, pumped me full of steroids which collapsed my entire hip for 6 months. So without answers I began my holistic journey. Fast forward a couple of years and still struggling with a mysterious whole body itchy, crawling “skin hell”, perfect teeth now deteriorating, thick hair now thinning rapidly and no more than a day or 2 at most relief….An acquaintance opened up a functional medicine practice. Cash only, I found a way. Within a month tests clearly showing my off the charts gluten allergy/sensitivity as well as the depletion of vital nutrients due to leaky gut and intestinal damage. dermatitis herpetiformis was more than likely what I was experiencing with my skin. I was happy. I thought this is easy, eat healthy Whole Foods, follow the diet restrictions and I finally get to heal and feel confident and like myself again very soon! 😔 Supplements are very pricey but I got them and began my healing. Which leads to the other major issue: not working, stay at home Mom of young kids, entirely financially dependent on my man of 7 plus years. He’s never been supportive of anything I’ve ever done or been thru. He controls everything. I’m not given much money ever at a time and when he does leave money it’s only enough to possibly get gas. His excuse is that I’ll spend it on other things. So my “allowance” is inconsistent and has conditions. He withholds money from me as punishment for anything he wants. Since being diagnosed, he’s gained a new control tactic to use as punishment. He now is in control of when I get to eat. He asked for proof of my diagnosis and diet bc he said I made it up just to be able to eat expensive organic foods. Then after I sent him my file from my doctor he then said she wasn’t a real doctor. 😡. I go days upon days starving, sometimes breaking down and eating things I shouldn’t bc I’m so sick then I pay horribly while he gets annoyed and angry bc I’m not keeping up with all the duties I’m supposed to be doing. His abuse turns full on when I’m down and it’s in these desperate times when I need his support and care the most that I’m punished with silence, being starved, ignored, belittled. He will create more of a mess just bc I’m unable to get up and clean so that when I am better, I’m so overwhelmed with chores to catch up that the stress causes me to go right back into a flare from hell and the cycle repeats. I’m punished for being sick. I’m belittled for starving and asking for healthy clean water. I’m purposely left out of his life. He won’t even tell me he’s going to the grocery or to get dinner bc he doesn’t want me to ask him for anything. I have no one. I have nothing. Im not better. My supplements ran out and I desperately need Vitamin D3 and a methylated B complex at the very minimal just to function….he stares at me blankly…no, a slight smirk, no words. He’s happiest when im miserable and I am miserable.  this is so long and im condensing as much as I can but this situation is so complicated and disgusting. And it’s currently my life. The “IT” girl, the healthy, beautiful, perfect skin, perfect teeth, thick and curly locks for days, creative and talented IT girl….now I won’t even leave this house bc Im ashamed of what this has dont to my body, my skin. Im disgusted. The stress is keeping me from healing and I think he knows that and that’s why he continues to keep me in that state. He doesn’t want me confident or successful. He doesn’t want me healed and healthy bc then how would he put the blame of all his problems on me? This journey has been hell and I’ve been in Hell before. I’ve been killed by an ex, I’ve been raped, robbed, held hostage, abused beyond nightmares but the cruelty I’ve experienced from him bc of this disease is the coldest I’ve ever experienced. I’ve wanted to give up. Starving and in tears, desperate…I found a local food pantry in our small town so I reached out just saying I had Celiac and was on hard times. This woman is blessing me daily with prepared gluten free meals, donations, educational info, people who know this disease and how they manage life and the blessings just keep coming. But it’s overwhelming and I feel like I don’t deserve it at all. He just glared and I know he’s going to sabotage it somehow. I don’t even know what to do anymore. I’m so broken and just want peace and healing. 
    • cristiana
      @Colleen H   I am just curious,  when you were tested for coeliac disease, did the doctors find out if you had any deficiencies? Sometimes muscle pain can be caused by certain deficiencies, for example, magnesium, vitamin D, calcium, and potassium.   Might be worth looking into having some more tests.  Pins and needles can be neuropathy, again caused by deficiencies, such as iron and B12,  which can be reversed if these deficiencies are addressed. In the UK where I live we are usually only tested for iron, B12 and vitamin D deficiencies at diagnosis.   I was very iron anemic and supplementation made a big difference.  B12 was low normal, but in other countries the UK's low normal would be considered a deficiency.  My vitamin D was low normal, and I've been supplementing ever since (when I remember to take it!) My pins and needles definitely started to improve when my known deficiencies were addressed.  My nutritionist also gave me a broad spectrum supplement which really helped, because I suspect I wasn't just deficient in what I mention above but in many other vitamins and minerals.  But a word of warning, don't take iron unless blood tests reveal you actually need it, and if you are taking it your levels must be regularly monitored because too much can make you ill.  (And if you are currently taking iron, that might actually be making your stomach sore - it did mine, so my GP changed my iron supplementation to a gentler form, ferrous gluconate). Lastly, have you been trying to take anything to lessen the pain in your gut?  I get a sore stomach periodically, usually when I've had too much rich food, or when I have had to take an aspirin or certain antibiotics, or after glutening.  When this happens, I take for just a few days a small daily dose of OTC omeprazole.  I also follow a reflux or gastritis diet. There are lots online but the common denominators to these diets is you need to cut out caffeine, alcohol, rich, spicy, acidic food etc and eat small regularly spaced meals.   When I get a sore stomach, I also find it helpful to drink lots of water.  I also find hot water with a few slices of ginger very soothing to sip, or camomile tea.  A wedge pillow at night is good for reflux. Also,  best not to eat a meal 2-3 hours before going to bed. If the stomach pain is getting worse, though, it would be wise to see the doctor again. I hope some of this helps. Cristiana    
    • Me,Sue
      I was diagnosed with coeliac disease a couple of years ago [ish]. I love my food and a variety of food, so it's been hard, as it is with everyone. I try and ensure everything I eat doesn't contain gluten, but occasionally I think something must have got through that has gluten in. Mainly I know because I have to dash to the loo, but recently I have noticed that I feel nauseous after possibly being glutened. I think the thing that I have got better at is knowing what to do when I feel wiped out after a gluten 'episode'. I drink loads of water, and have just started drinking peppermint tea. I also have rehydration powders to drink. I don't feel like eating much, but eventually feel like I need to eat. Gluten free flapjacks, or gluten free cereal, or a small gluten free kids meal are my go to. I am retired, so luckily I can rest, sometimes even going to bed when nothing else works. So I feel that I am getting better at knowing how to try and get back on track. I am also trying to stick to a simpler menu and eat mostly at home so that I can be more confident about what I am eating. THANKS TO THOSE WHO REPLIED ABOUT THE NAUSEA .
    • Francis M
      Thanks. Since the back and forth and promises of review and general stalling went on for more than six months, the credit company will no longer investigate. They have a cutoff of maybe six months.
×
×
  • 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.