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

Before & After Cd Diet


Guest LuvtoLaff06

Recommended Posts

Guest LuvtoLaff06

I was diagnosed last November with Celiac Disease due to symptoms of chronic diarrhea and weight loss. Confirmed through blood tests. I started on the diet. After one month I was sickly and depressed. My nails turned a grayish tint and became weak- easily splitting/breaking. My hair stopped growing completely. I was constantly starving!!! After almost 2 months, I gave up! I started eating normal again and now, 6 weeks later, my nails are white again and strong, my hair is growing, I'm slowly gaining back the weight, and have lots of energy and no longer depressed. The only symptom I still have is the chronic diarrhea, but I've lived with that for so long that it feels "normal" to me. I feel great!! So, it seems to me the diet doesn't always help! Just letting ya'll know my experience!


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



Celiac.com Sponsor (A8-M):



Guest LisaB

Sounds like a misdiagnosis to me, if you have celiac and go gluten free your absorbtion would improve, not decline. Makes no logical sense.

aldociao Rookie
So, it seems to me the diet doesn't always help!

LuvtoLaff,

It does sound not logical. Are you sure your gluten-free diet was a good one? If it was, you should not have gotten the symptoms you mentioned even if you are not gluten intolerant. A gluten-free diet, a good one, should bring health regardless of one's sickness. There are those on this Board who might be able to tell you if you did have a good diet. (I'm still in the process of finding out myself.) Why not post what you ate on a typical day, or days, so that it can be evaluated by others here who have thrived on the gluten-free diet for years?

You mentioned that your only symptoms prior to being diagnosed were chronic diarrhea and weight loss. My only symptoms (I'm self-diagnosed, awaiting results from Interolab) were weight loss and a difficult to define feeling of being neither well nor sick, a kind of fatigue that wasn't severe enough to cause serious problems but kept me for doing many of the things I wanted to do. Though there were signs, very minor signs, of feeling better for the first two months being gluten-free, only now, as I'm approaching the third month, has there been a very noticeable change for the better--more energy. The weight, 2lbs in the last week, is the first weight gain in so long a time that I can't remember the last time I wasn't losing, or remaining the same. I guess the intestine is healing, but it took almost 3 months for any really noticeable results.

I'm not suggesting that you should stay on the diet you were on--there has to be something wrong with it. But it certainly couldn't be because it's gluten-free. What I'm suggesting is that you give it another try after getting feedback on what might be wrong from those here who have the experience to help you in your food choices. If you do have celiac disease and you don't take the necessary steps now to deal with it, it can only get worse as time goes by, especially since, like me, you are mostly symptom free, without the helpful, though annoying, reactions that will tell you that you are doing what you shouldn't be doing. Not if you want health. --Aldo

Laura Apprentice

Did your diet get worse in some other way? It can be hard to maintain a healthy diet when you have to eliminate so many things. Is there some nutrient that you got mostly through foods containing gluten or through something you ate with a food containing gluten that you didn't get on a gluten-free diet?

You don't say if you were diagnosed celiac with blood tests and/or biopsy, so if not maybe you were misdiagnosed. But I still don't see why, given a healthy gluten-free diet, you'd get the symptoms you describe. So you might want to go back and ask your doctor some questions, because neither of the sets of symptoms you describe sounds like anything I'd want to live with.

Guest shar4

Luvtolaf,

I'm sorry that the diet didn't work for you. I was diagnosed around the same time as you and went gluten-free, and have stayed that way. I had been taking iron supplements before diagnosis, and hadn't really noticed an improvement until I started getting B12 injections. I have to admit, I feel GREAT, and am starting to do things that I haven't done in a long time. I feel like I have years of downtime to make up for and I'm working on it every chance I get.

I hope things work out for you, and like some of the others, it sounds like there is something else going on.

Blessings.

Sharon

Guest LisaB
After one month I was sickly and depressed. My nails turned a grayish tint and became weak- easily splitting/breaking. My hair stopped growing completely.

Sorry to say, that is not enough time for those things to have occured in my opinion. I has taken years for that kind of decline even though I was very sick, once going gluten free and when I started to absorb nutrition, things started to turn around and quite quickly, but not that quickly.

It seems to me you would have to be only drinking water for something even close to that to be happening to you, you may have resented the diagnosis but I hope you aren't kidding yourself, your the only one that knows.

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. - tiffanygosci replied to tiffanygosci's topic in Introduce Yourself / Share Stuff
      1

      Celiac support is hard to find

    2. - trents replied to mamaof7's topic in Parents, Friends and Loved Ones of Celiacs
      1

      Help understand results

    3. - mamaof7 posted a topic in Parents, Friends and Loved Ones of Celiacs
      1

      Help understand results

    4. - Dizzyma replied to Dizzyma's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Newly diagnosed mam to coeliac 11 year old

    5. - tiffanygosci posted a topic in Introduce Yourself / Share Stuff
      1

      Celiac support is hard to find

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

    • Total Members
      132,955
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • tiffanygosci
      EDIT: I did find a monthly Zoom meeting for Celiacs through the Celiac Disease Foundation, so I'll be able to talk with some other people on January 15. And I also found a Celiac Living podcast on Spotify made by a celiac. I feel a little bit better now and I am still hoping I will find some more personal connections in my area.
    • trents
      Welcome to the celiac.com community, @mamaof7! It means for the one celiac disease antibody test that was ordered, she tested negative. However, other tests should have been ordered, especially for someone so young who would have an immature immune system where there would be a high probability of being IGA deficient.  The one test that was ordered was an IGA-based antibody test. It is not the only IGA antibody test for celiac disease that can be run. The most common one ordered by physicians is the TTG-IGA. Whenever IGA antibody tests are ordered, a "total IGA" test should be included to check for IGA deficiency. In the case of IGA deficiency, all other IGA tests results will be inaccurate. There is another category of celiac disease antibody tests that can be used in the case of IGA deficiency. They are known as IGG tests. I will attach an article that gives an overview of celiac disease antibody tests. All this to say, I would not trust the results of the testing you have had done and I would not rule out your daughter having celiac disease. I would seek further testing at some point but it would require your daughter to have been eating normal amounts of gluten for weeks/months in order for the testing to be valid. It is also possible she does not have celiac disease (aka, "gluten intolerance") but that she has NCGS (Non Celiac Gluten Sensitivity, or just "gluten sensitivity" for short) which is more common. The difference is that celiac disease is an autoimmune disorder that damages the lining of the small bowel whereas NCGS does not autoimmune in nature and does not damage the lining of the small bowel, though the two conditions share many of the same symptoms. We have testing to diagnose celiac disease but there are no tests for NCGS. To arrive at a diagnosis of NCGS, celiac disease must first be ruled out. A gluten free diet is the solution to both maladies.   
    • mamaof7
      For reference, daughter is 18 mths old. Was having painful severe constipation with pale stool and blood also bloating (tight extended belly.) Liver and gallbladder are normal. Ultrasound was normal. Dr ordered celiac blood test. We took her off gluten after blood draw. She is sleeping better, no longer bloated and stools are still off color but not painful.    "GLIADIN (DEAMID) AB, IGA FLU Value  0.84 Reference Range: 0.00-4.99 No further celiac disease serology testing to be performed. INTERPRETIVE INFORMATION: Deamidated Gliadin Peptide (DGP) Ab, IgA A positive deamidated gliadin (DGP) IgA antibody result is associated with celiac disease but is not to be used as an initial screening test due to its low specificity and only occasional positivity in celiac disease patients who are negative for tissue transglutaminase (tTG) IgA antibody."   Anyone know what in the world this means. She isn't scheduled to see GI until late April. 
    • Dizzyma
      Hi Trent and Cristiana, thank you so much for taking the time out to reply to me.  My daughters GP requested bloods, they came back as showing a possibility of celiac disease, she advised me to continue feeding gluten as normal and wait on a hospital appointment. When we got that the doctor was quite annoyed that the gp hadn’t advised to go gluten free immediately as she explained that her numbers were so high that celiac disease was fairly evident. That doctor advised to switch to a gluten-free diet immediately which we did but she also got her bloods taken again that day as it made sense to double check considering she was maintaining a normal diet and they came back with a result of 128. The hospital doctor was so confident of celiac disease that she didn’t bother with any further testing. Cristiana, thank you for the information on the coeliac UK site however I am in the Rrpublic of Ireland so I’ll have to try to link in with supports there. I appreciate your replies I guess I’ll figure things as we go I just feel so bad for her, her skin is so sore around her mouth  and it looks bad at an age when looks are becoming important. Also her anxiety is affecting her sleep so I may have to look into some kind of therapy to help as I don’t think I am enough to help. thanks once again, it’s great to be able to reach out xx   
    • tiffanygosci
      I have been feeling so lonely in this celiac disease journey (which I've only been on for over 4 months). I have one friend who is celiac, and she has been a great help to me. I got diagnosed at the beginning of October 2025, so I got hit with all the major food holidays. I think I navigated them well, but I did make a couple mistakes along the way regarding CC. I have been Googling "celiac support groups" for the last couple days and there is nothing in the Northern Illinois area. I might reach out to my GI and dietician, who are through NW Medicine, to see if there are any groups near me. I cannot join any social media groups because I deleted my FB and IG last year and I have no desire to have them back (although I almost made a FB because I'm desperate to connect with more celiacs). I'm glad I have this forum. I am praying God will lead me to more people to relate to. In my opinion, celiac disease is like the only food- related autoimmune disease and it's so isolating. Thanks for walking alongside of me! I'm glad I know how to help my body but it's still not easy to deal with.
×
×
  • 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.