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

Newbie At The End Of Her Rope

laughs2loud

By laughs2loud
in Coping with Celiac Disease

Recommended Posts

laughs2loud Newbie
laughs2loud
Posted

Ok, so I was diagnosed in early June of this year. I had two negative blood tests, and a biopsy that showed lots of white blood cells, and which my doctor said was positive for celiacs.

I have been as damn close to gluten free as I can imagine. Yes, there have been a few slip ups (always when I try to eat out, which is rare now), but at home, I am close to gluten-free as I can be. I've checked shampoos, and other such things. I've called companies. I have read about 15 books on celiac disease and gluten-free. I am doing EVERYTHING I can think of that's right.

So why don't I feel ANY better? The first few weeks, I thought things might be getting better, but now I'm sick ALL the time. Last night I couldn't even get out of bed (except to run to the bathroom every 5 minutes). In the last 2 weeks I've averaged one meal a day (if that) because I can't stomach anything else. What is going on? What am I doing wrong?

All I know is that this is miserable. I think I feel worse than when I was still eating gluten.

Anyone have any suggestions? How long did it take you to start feeling better? What should I do next?

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

Celiac.com Sponsor (A8-M):


JNBunnie1 Community Regular
JNBunnie1
Posted

It sounds to me like you might be dairy intolerant. Do you eat much dairy, and do you notice if you feel better or worse afterwards?

Lisa Mentor
Lisa
Posted
Ok, so I was diagnosed in early June of this year. I had two negative blood tests, and a biopsy that showed lots of white blood cells, and which my doctor said was positive for celiacs.

I have been as damn close to gluten free as I can imagine. Yes, there have been a few slip ups (always when I try to eat out, which is rare now), but at home, I am close to gluten-free as I can be. I've checked shampoos, and other such things. I've called companies. I have read about 15 books on celiac disease and gluten-free. I am doing EVERYTHING I can think of that's right.

So why don't I feel ANY better? The first few weeks, I thought things might be getting better, but now I'm sick ALL the time. Last night I couldn't even get out of bed (except to run to the bathroom every 5 minutes). In the last 2 weeks I've averaged one meal a day (if that) because I can't stomach anything else. What is going on? What am I doing wrong?

All I know is that this is miserable. I think I feel worse than when I was still eating gluten.

Anyone have any suggestions? How long did it take you to start feeling better? What should I do next?

Welcome to the forum!

I would suggest that you go dairy light or eliminate it all together. After some healing time you can introduce it again.

Have you checked your cosmetics, medications, vitamins, shampoo, toothpaste, lotions. Do you use a separate dedicated toaster, old wooded utensils or shared scratched pots and pans.

I have never heard of "a lot of white blood cells as a description/diagnosis for Celiac (not celiacs). I am not sure what they actually look at in a biopsy sample.

Many people take several months to feel better. It's almost impossible to go 100% gluten free over night. There is just too much to learn and there are too many unsuspecting traps.

Try to revisit what you put into your mouth and see if there are some things that you might have missed. And learn as much as you can from this forum, it's your best source.

laughs2loud Newbie
laughs2loud
Posted
  • Author

I'll try going dairy free for a while, but if feels like EVERYTHING I put in my body makes me sick lately. Certainly worth a try, though.

It's just frustrating because it's been 4 months post-diagnosis, and eveyone I talk to says they started feeling better almost immediately.

How long did it take you out there to start feeling better? And how long after being accidentally "glutened" does it take you to feel better?

ConnieA84 Rookie
ConnieA84
Posted

Wow reading this post feels like someone is reading my mind. I am in the exact same boat in fact I posted something about dairy free last week out of frustration. I have been Gluten free for 2 months and am in the same boat of not feeling any better. A lot of people seem to feel relief in a few weeks but I was still having symptoms. About a week ago I posted asking about people who have gone diary free in addition to gluten free. A lot of people seem to think it was a good idea so I decided to give it a try, I couldn't feel any worse. I am very happy to announce that after three days of going dairy free My "stomach" issues are almost done, my clothing fits better, and I feel like I am finally on the road to relief. I had been avoiding going dairy free as it was difficult enough to cut out gluten. I tried taking lactose pills but they did nothing. So I would suggest as well to go dairy free, try it for a week and be religious about it, if that does not help try cutting out soy as that can also be difficult for people to digest.

Hang in there I completely sympathize with you it's so frustrating to be diagnosed and then not get relief. Keep trying there is something that your eating that is still causeing problems and when you find it you know....

Let us know how it goes we can all benefit from others experience...Connie

JNBunnie1 Community Regular
JNBunnie1
Posted
I'll try going dairy free for a while, but if feels like EVERYTHING I put in my body makes me sick lately. Certainly worth a try, though.

It's just frustrating because it's been 4 months post-diagnosis, and eveyone I talk to says they started feeling better almost immediately.

How long did it take you out there to start feeling better? And how long after being accidentally "glutened" does it take you to feel better?

Everyone is different with recovery. Some people are a day or two, I take a full month. I'm a very unusual case though, I've never heard anybody else say that happens, so don't start worrying about THAT.

It's usually recommended that people go dairy free along with gluten free, because we so frequently have dairy problems as well. Casein (case-in, pronounced) is the protein in milk some people react to. This is not lactose intolerance, so taking a lactase pill would not help. It actually took me over a year to get completely better, after going gluten free. I think you should really drop dairy and see how you feel after a few weeks-month.

mftnchn Explorer
mftnchn
Posted

I agree with the milk and possibly soy suggestions.

Also you could have some other food sensitivities, which could also be temporary. Some have had testing done. Others do elimination diets.

I got worse initially instead of better. It was like my body was totally overhauling itself to adjust to Gluten-free Casein-free. I think it was also the trigger for a recurrance of my lyme disease and I had to restart treatment.

I am now feeling relatively good, but still don't have normal digestion and elimination as well as a lot of sinus problems.

Have you tried a diet that is extremely easy to digest? Vegetables soft and highly cooked, etc.

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

Celiac.com Sponsor (A8-M):


loco-ladi Contributor
loco-ladi
Posted

AFter an accidental glutening I am worthless for the next 2-3 days, and dont even think I am getting more than 5 feet from the nearest bathroom...... the 4-6 day period is "the brain fog" where dont ask me to do anything important cause I hardly know my name let alone anything else.... After that lifts it normally is about 24 hours later that I feel back to my current normal self.

So if ya add all that up I take a week or so to fully recover.

ravenwoodglass Mentor
ravenwoodglass
Posted

Are you eating mostly unprocessed naturally gluten free food or are you eating mainstream foods that appear gluten-free by the label? Are you checking every product that has natural flavors? Do you drink alcohol? Many with gluten intolerance can tolerate distilled grains in alcohol and vinegar but many do not. Have you checked all meds, even OTC ones? There are not regulations about gluten in OTC or script drugs and many of the preperations sold for tummy problems are not gluten free. Beano and Tums are in this group. Are you doing any remolding or are you into crafts? Many of the stuff like wallpaper paste, drywall and it's compound, glues, paints and clays are not safe. I thought I was in serious trouble when I remodeled after being gluten-free for about 6 months and got sooo very sick. I was doing drywall, finishing and hanging and never thought about it till I was almost done with the project and doubting I would ever be able to finish.

FootballFanatic Contributor
FootballFanatic
Posted

Check any medications by the manufacturer, not pharmacist and not glutenfreedrugs.com,

There are many generics and they alll have different formulas.

laughs2loud Newbie
laughs2loud
Posted
  • Author

Thank you all so much for the response! I will try eliminating dairy. Also, those supplements are def worth a try too.

Is it worth a trip back to the doctor? I'm not on any meds right now (he took me off Birth control, cause there was something on my liver, and there will be a follow up CT scan for that next month), so it's not meds. I'm not remodeling, or crafting. Yesterday, all I ate was vegetables...still got sick. Mostly, I am eating foods I know to be gluten free by design...like things I buy from GFMall, or amazon's gluten free list.

Is it worth a trip back soon? Or is that a waste of my money?

JNBunnie1 Community Regular
JNBunnie1
Posted
Thank you all so much for the response! I will try eliminating dairy. Also, those supplements are def worth a try too.

Is it worth a trip back to the doctor? I'm not on any meds right now (he took me off Birth control, cause there was something on my liver, and there will be a follow up CT scan for that next month), so it's not meds. I'm not remodeling, or crafting. Yesterday, all I ate was vegetables...still got sick. Mostly, I am eating foods I know to be gluten free by design...like things I buy from GFMall, or amazon's gluten free list.

Is it worth a trip back soon? Or is that a waste of my money?

I'm not really sure what a doctor can do for you at this point. Also, be careful with 'whole food' supplements, they frequently have wheat grass juice in them, which i understand is not safe. I would say take a B vitamin complex supplement for now and try to get enough protein in your diet, it will be needed for healing your intestines. Also, try to get a lot of fatty veggie stuff, like raw olive oil drizzled on your cooked veggies and use avocado a lot. Those fats will help you digest the vitamins you need. One of my favorite meals is scrambled eggs with chopped avocado and salsa.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,857
    • Most Online (within 30 mins)
      7,748
    LowellFrancis
    Newest Member
    LowellFrancis
    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

    • Rogol72
      Ibuprofen

      By Rogol72 · Posted

      Some interesting articles regarding the use of Zinc Carnosine to help heal gastric ulcers, gastritis and intestinal permeability. I would consult a medical professional about it's use. https://www.nature.com/articles/ncpgasthep0778 https://www.rupahealth.com/post/clinical-applications-of-zinc-carnosine---evidence-review https://pmc.ncbi.nlm.nih.gov/articles/PMC7146259/ https://www.fallbrookmedicalcenter.com/zinc-l-carnosine-benefits-dosage-and-safety/
    • Jillian83
      Celiac and dermatitis herpetiformis has taken Me from Me

      By Jillian83 · Posted

      He is. Which makes everything even more difficult. I’m not a believer in “staying for the kids” but I have nowhere to go and it’s not just me, it’s me plus my babies. We live in a beautiful place, lots of land in the country and me and the kids love the place we’ve called home for their entire lives. But Im seeing that he’ll never change, that my kids deserve a happy healthy Momma, and that staying in this as is will be the early death of me. Then I look at the scars covering my entire body…this disease and the chronic stress I’ve been enduring for years that tell me I’m no longer beautiful and no one will ever look at me with interest again. I try self care, try to give myself grace so I can just start loving myself enough to gain strength but the slightest sparkle in my eye and skip in my step attracts his wrath and it all comes crashing ten fold. Life is just absolutely railing me from every single direction leaving me wanting to wave that white flag bc I don’t feel like there’s much hope no matter what happens. 
    • trents
      Celiac and dermatitis herpetiformis has taken Me from Me

      By trents · Posted

      Is this man the father of your children?
    • Jillian83
      Celiac and dermatitis herpetiformis has taken Me from Me

      By Jillian83 · Posted

      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
      Ibuprofen

      By cristiana · Posted

      @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    
×
×
  • 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.