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

2 Months In And Not Feeling Great

greenchick22

Recommended Posts

greenchick22 Rookie
greenchick22
Posted

I've been gluten free for 2 months now (blood work negative for celiac, but doctor thinks it could be intolerance).  I was hoping at this point I'd be feeling a lot better but I'm not.   Still exhausted, achy, skin problems.  I've had more stomach issues the past month than I have in many months previously.  I'm starting to wonder if either

 

-I'm not gluten intolerant after all and i should stop the diet...I keep losing weight and I'm way too skinny.  

 

or

 

-If cross contamination has been affecting me.  I guess because I don't have Celiacs I didn't worry too much about that, but maybe if I'm very sensitive I need to.  

 

Anyone else who is non-celiac gluten intolerant have to be very careful??

 

Thoughts?

 

Thank you!

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

Celiac.com Sponsor (A8-M):


lisa78 Newbie
lisa78
Posted

hi, i am also classed as gluten intolerant with negative results for celiac. I am now 13 months into being gluten free.

 

Before I realised i was gluten intolerant I was tired and dizzy and had no energy. I went from a size uk 12 to a uk 6 in 2 months. My pulse rate was high and couldn't walk up the street without being breathless. I was classed as depressed and my memory was terrible. Within 2 weeks of stopping the gluten the dizzy foggy feeling was gone, my pulse rate was down and i was less breathless. But then then the stomach problems started with a vengeance! Almost like my body was saying "don't you dare go near that stuff again - I am trying to heal!"

 

I had not had major tummy problems before i went gluten free but suddenly the slightest contamination sent me crashing. Bloating within minutes of eating it and tummy cramps and the big D later. Followed by 3 days of crankiness, bloating everytime i ate and tiredness until it left my system. I couldn't even eat gluten free food at family get togethers or restaurants! The problem being that gluten is really sticky and was on all the plates, knives and forks etc. I was super-sensitive and my body was having none of it! 

 

This caused a few awkward moments where I felt like i was putting people out because i was only gluten intolerant and not celiac! I felt like i was doing something bad to my husband and kids if i made them go gluten free with me. I felt like i was inflicting some weird fad diet on them! But i wanted to get better and i still felt so tired. Somewhere amongst it all i decided to stop worrying about at and go for it properly. To stop worrying that i was putting people out and to treat myself like i was celiac.

 

I got up one morning and went to my supermarket and bought the cheapest range of pans, cutlery, plates, washbowl, dishcloths etc i could find. I chucked everything that had gluten in it in the bin and scrubbed my kitchen clean (i pretty much cried right through the cleaning! I was so weak it felt so hard at the time!) I changed my toothbrush, shampoo and hairspray. I didn't eat out or have takeaways and even took my own coffee cup to my friends houses! I also bought whole lot of vitamins to try and build my strength back up.

 

I found my strength to do this from this site. A big THANK YOU to all those who have posted your comments on here! It was 120% the best decision I ever made. My home is gluten free now and 13 months on i do not know myself. No depression, tiredness, dizziness, breathlessness, bloating etc. My husband and kids do not feel like they are doing without their treats - instead my kids hug me and say 'I am so pleased i have my mummy back' Apparently i am worth more than a biscuit haha  :)

 

DO NOT GIVE UP YOUR GLUTEN FREE DIET - It will get better. Treat yourself as celiac and you will get better. My personal belief is that gluten intolerance is celiac and the docs don't know everything. I have met celiacs that display no symptoms at all and yet i felt like I had only months to live! Even if you are not sure - a year gluten free will not harm anyone. Its a healthy diet and you may change your whole life for the better.

 

I can now eat at restaurants with only minor amounts of bloating and have a coffee at friends houses. But after a year of being super careful i think if i have the choice i will always opt for my own food etc if i can. Its just not worth going back to those dark days.

 

As a last thought. I realised i had a secondary intolerance about 6 months into the gluten free diet. It was lactose. I know the thought of cutting anything else out right now is hard but hopefully you will consider it. To be honest lactose was fairly easy in comparison. And i can now eat it again in small amounts because i was so careful with the gluten free diet.

 

Good luck and don't give up - life will get better  :D

lisa78 Newbie
lisa78
Posted

I forgot to say that i also doubled my daily calorie intake at first. I stopped worrying about eating low fat wholewheat and just ate and ate and ate. It did take 8 months before i gained any weight so my body clearly needed the calories. It sounds terribly unhealthy but cheese and bacon omlete was my choice - quick and easy. I also ate lots of nuts and dried fruit. 

 

Basically, stuck to easy and naturally gluten free foods until i put the weight back on. I am now a size uk 10.

notme Experienced
notme
Posted

greenchick - have you read the newbie 101 thread?  lots of good advice and you are pretty new to all this.  2 months is not very long and i did so much better myself when i embraced the whole lifestyle and it's all about not getting any gluten at all.  period.  if you are getting cc'd anywhere, it will put your body back when it comes to healing.  i was underweight, (almost starved to death, really, my doctor was getting ready to check me into the hospital and put me on i.v.) and while things were touch and go for awhile, and i was sick through withdrawal - once my body got to healing i started putting on healthy weight.  eat what agrees with you for now.  skip the dairy for awhile.  and for mercy's sake, cut yourself some slack.  take a nap, take care of you.  we all started somewhere.  i had no cheeks, i looked like a skeleton - now when i smile, i can see my face cheeks :) and i know my butt cheeks are back, cause the husband has taken to smacking them when i walk by.  hang in there!  welcome to the board - it's a good place for you right now.  out of all of us, somebody is going/has gone through exactly what you are right now.  and, lisa78 thank you for some great advice - looks like you might have spent a little time lurking :)  you have a good handle on this thing!  (((((hugs))))) to everybody :)

Dugudugu Rookie
Dugudugu
Posted

It took me half a year to feel better....

Archived

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

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


  • Member Statistics

    • Total Members
      131,543
    • Most Online (within 30 mins)
      7,748
    yfuvhg
    Newest Member
    yfuvhg
    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

    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
    • Jsingh
      Protein or fat?

      By Jsingh · Posted

      Hi,  I care for my seven year old daughter with Celiac. After watching her for months, I have figured out that she has problem with two kinds of fats- animal fat and cooking oils. It basically makes her intestine sore enough that she feels spasms when she is upset. It only happens on days when she has eaten more fat than her usual every day diet. (Her usual diet has chia seeds, flaxseeds, and avocado/ pumpkin seeds for fat and an occasional chicken breast.) I stopped using cooking oils last year, and when I reintroduced eggs and dairy, both of which I had held off for a few months thinking it was an issue of the protein like some Celiac patients habe mentioned to be the case, she has reacted in the same fashion as she does with excess fats. So now I wonder if her reaction to dairy and eggs is not really because of protein but fat.   I don't really have a question, just wondering if anyone finds this familiar and if it gets better with time.  Thank you. 
    • Chanda Richard
      High Cost of Gluten-Free Foods

      By Chanda Richard · Posted

      Hello, My name is Chanda and you are not the only one that gose through the same things. I have found that what's easiest for me is finding a few meals each week that last. I have such severe reactions to gluten that it shuts my entire body down. I struggle everyday with i can't eat enough it feels like, when I eat more I lose more weight. Make sure that you look at medication, vitamins and shampoo and conditioner also. They have different things that are less expensive at Walmart. 
    • petitojou
      Frequent nausea after gluten-free diet

      By petitojou · Posted

      Thank you so much! I saw some tips around the forum to make a food diary and now that I know that the community also struggles with corn, egg and soy, the puzzle pieces came together! Just yesterday I tried eating eggs and yes, he’s guilty and charged. Those there are my 3 combo nausea troublemakers. I’m going to adjust my diet ☺️ Also thank you for the information about MCAS! I’m from South America and little it’s talked about it in here. It’s honestly such a game changer now for treatment and recovery. I know I’m free from SIBO and Candida since I’ve been tested for it, but I’m still going to make a endoscopy to test for H. Pylori and Eosinophilic esophagitis (EoE). Thank you again!! Have a blessed weekend 🤍
    • knitty kitty
      Unusual bright yellow but odourless discharge

      By knitty kitty · Posted

      Yes, I, too, have osteoporosis from years of malabsorption, too.  Thiamine and magnesium are what keep the calcium in place in the bones.  If one is low in magnesium, boron, selenium, zinc, copper, and other trace minerals, ones bone heath can suffer.  We need more than just calcium and Vitamin D for strong bones.  Riboflavin B 2, Folate B 9 and Pyridoxine B 6 also contribute to bone formation and strength.   Have you had your thyroid checked?  The thyroid is important to bone health as well.  The thyroid uses lots of thiamine, so a poorly functioning thyroid will affect bone heath.  
×
×
  • 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.