Jump to content
  • 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):

2 Months In And Not Feeling Great


greenchick22

Recommended Posts

greenchick22 Rookie

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

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

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

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

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

Archived

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

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

    • Total Members
      134,082
    • Most Online (within 30 mins)
      10,442

    Joe B
    Newest Member
    Joe B
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      Sigh. I posted this yesterday based on the Safeway website. I went back again today to their website to double check. On the page where they are selling Vanilla Bean flavor, it has a distinct Certified Gluten Free label. Other flavors on the Safeway website didn't have the gluten-free statement. Today I went into the store. None of the flavors I looked at, including Vanilla Bean, have a Gluten Free statement. Is it safe? Who knows. The ingredients are either safe or nearly safe (some have "natural flavor"). There are warnings about "contains milk and soy" but not about wheat - this implies they are safe, but again, who knows. On the other hand, every flavor I checked of their Slow Churn line of ice creams has wheat as an ingredient. 100% not safe.
    • knitty kitty
      Do keep in mind that many of the newly diagnosed have lactose intolerance.  This is because the villi lining the intestinal tract are damaged, and can no longer make the enzyme lactAse which breaks down the milk sugar lactOse.  When the villi grow back (six months to two years), they can again produce the enzyme lactAse, and lactose intolerance is resolved.  However, some people (both those with and without Celiac Disease) are genetically programmed to stop producing lactase as they age.   Do be aware that many processed foods, including ice cream, use Microbial Transglutaminase, a food additive commonly called "meat glue," used to enhance texture and flavor.  This microbial transglutaminase has the same immunogenicity as tissue transglutaminase which the body produces in response to gluten in people with Celiac Disease.  Tissue Transglutaminase (tTg IgA) is measured to diagnose Celiac Disease in blood tests.  Microbial Transglutaminase acts the same as Tissue Transglutaminase, causing increased intestinal permeability and inflammation.   New findings show that microbial transglutaminase may be able to trigger Celiac Disease and other autoimmune and neurodegenerative diseases.   Microbial Transglutaminase is not required to be listed on ingredients labels as it's considered a processing aid, not an ingredient in the U.S.  Microbial Transglutaminase has been GRAS for many years, but that GRAS standing is being questioned more and more as the immunogenicity of microbial transglutaminase is being discovered. Interesting Reading:  Microbial Transglutaminase Is a Very Frequently Used Food Additive and Is a Potential Inducer of Autoimmune/Neurodegenerative Diseases https://pmc.ncbi.nlm.nih.gov/articles/PMC8537092/
    • Aretaeus Cappadocia
      There is a 10 year old post in this forum on Edy's and Dreyer's ice cream. The information is somewhat outdated and the thread is closed to further comment, so here is a new one. Edy's And Dreyer's Grand Vanilla Bean Ice Cream - 1.5 Quart is labeled "Gluten Free". This is a different answer than years gone by. I don't know the answer for any other flavor at this moment. On 1 May, 2026, Edy's website says: "As a general rule, the gluten in Edy's and Dreyer's® frozen dessert products is present only in the added bakery products, such as cookies, cake or brownies. We always label the eight major food allergens on our package by their common name. We recommend to always check the label for the most current information before purchasing and/or consuming a product. The exception to this rule is our Slow Churned French Silk frozen dairy dessert, which contains gluten in the natural flavors." https://www.icecream.com/us/en/brands/edys-and-dreyers/faq It seems that Edy's and Dreyer's are more celiac-friendly than they were 10 years ago. Once I found enough information to make today's buying decision, I stopped researching.
    • Aretaeus Cappadocia
      probably not your situation @Mimiof2, but allow me to add one more to @trents list of celiac-mimics: "olmesartan-induced sprue-like enteropathy"  
    • knitty kitty
      My dad had an Abdominal Aortic Aneurysm.  Fortunately, it was discovered during an exam.  The doctor could feel my dad's heart beating in his stomach/abdomen.  The aneurysm burst when the doctor first touched it in surgery.  Since he was already hooked up to the bypass machine, my dad survived ten more years.  Close call! Triple A's can press on the nerves in the spinal cord causing leg pain.  I'm wondering if bowing the head might have increased the pressure on an aneurysm and then the nerves.   https://gulfcoastsurgeons.com/understanding-abdominal-aortic-aneurysm-symptoms-and-causes/ Abdominal Aortic Aneurysm Presenting as a Claudication https://pmc.ncbi.nlm.nih.gov/articles/PMC4040638/
×
×
  • Create New...