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

Still Sick

Chrisco

By Chrisco
in Coping with Celiac Disease

Recommended Posts

Chrisco Apprentice
Chrisco
Posted

I have been Gluten Free for 4 weeks now and I am still sick. I feel just as sick as I did before I started the diet. I have had some improvements with my depression and anxiety but nothing physical has improved. I'm starting to second guess my diagnosis. How long does it take to see an improvement. It is such a hard diet to stick with and if I don't start feeling better soon I am thinking of going off the diet. I was diagnosed because of my symptoms and I have the genetic marker. The blood test came back negative for the antibodies and I had a scope done but the GI Doctor didn't biopsy me for Celiac (so I basically had the test for nothing). This is why it makes me second guess the diagnosis. I have to see my doctor in 2 weeks for a follow up. She wanted to see if I've had any improvement to my symptoms after being on the diet for 6 weeks. Although this diet is hard I was really hoping that I did have Celiac. I have been sick and undiagnosed for 16 years now and I just want to figure out why my body hates me so much. I'm so tired of feeling so sick. :(

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

Celiac.com Sponsor (A8-M):


rtrheli Newbie
rtrheli
Posted

You need to give your body longer to clear out everything. Everyone on here will agree with me, 4 weeks is not long enough, especially undiagnosed and suffering for 16 years. I personally would try it for 6 months before giving up. During that time you should start feeling better.

tarnalberry Community Regular
tarnalberry
Posted

Have you eliminated all sources of contamination? Shared toasters, utensiles, old colanders, old non-stick pans (if they aren't pristine), shared condiments, etc.? Have you eliminated packaged products produced in shared facilities? How confident are you of being 110% gluten free?

Ahorsesoul Enthusiast
Ahorsesoul
Posted

I believe you have stated in previous posts that you have the genetic marker for celiac. That along with they symptoms should be enough to say you have celiac disease.

How gluten free are you? Is your kitchen gluten free? All your personal care products, medications and supplements gluten free? Are you getting cross contaminated? Remember just a crumb can make you sick. So it could be something small that is holding you back. Some people react to kissing someone who has eaten gluten.

You didn't get sick over night and it will take time to heal. Cut out dairy and soy for the next few months in addition to the gluten. You will have to give it time. Every time you ingest some gluten you start from the beginning.

Think of it as a cut in your arm with stitches. If you pull the stitches out every now and then, it's going to take a longer time to heal.

You can do this and you will feel better. How fast you feel better will depend on how gluten free you really are and how long you maintain it. And yes, we all thought we were totally gluten free at one time and found out how wrong we were. Who knew it was in root beer or orange drinks!

Yes, you may have other food issues. Keep a food and symptom journal.

David in Seattle Explorer
David in Seattle
Posted

I just want to figure out why my body hates me so much. I'm so tired of feeling so sick. :(

Chris - I really can relate to your post, and especially the last 2 lines. What must it be like to only have to contend with all the ORDINARY adversities life throws at you, and not feel like you also have to do battle with your body as well? I have not had a firm diagnosis, but I have been trying gluten free for about 3 months. I am doing everything I can to eliminate ALL gluten, and as you know, it is not easy. I'd say I feel slightly better than I did, but I'm certainly not 100%. Make sure you have not over looked anything, and hang in there. This is a very supportive group and you are not alone.

Cute dog, BTW... :)

David

Yoshi Newbie
Yoshi
Posted

I've been gluten-free for only a month. I felt really good the first 3 weeks. This past week, I've felt absolutely horrible. I'm sure it's my body's reaction to detoxing. Gluten has been damaging my body for a long, long time, so the healing isn't going to happen overnight. It may be the same with you, and it's just going to take time. Maybe I'm unusual in that I felt so good at first, and I want to get there again, and I'm willing to stick with the diet through this rough time to get back there. Focus on your goals. Mine are to heal and feel good. Get some support (here is a good place). Vent when you need to (here is also a good place). Drink lots of water to say hydrated. Things look and feel worse when you're tired, so get as much rest as you can (not easy when you work and take care of a family). Just hang on and don't give up.

cat3883 Explorer
cat3883
Posted

Have you checked your shampoo, soap, toothpaste, and any meds you take including over the counter? It does take some time. The first 6 weeks were the toughest.

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

Celiac.com Sponsor (A8-M):


Shannonlass Apprentice
Shannonlass
Posted

I've been gluten-free for only a month. I felt really good the first 3 weeks. This past week, I've felt absolutely horrible. I'm sure it's my body's reaction to detoxing. Gluten has been damaging my body for a long, long time, so the healing isn't going to happen overnight. It may be the same with you, and it's just going to take time. Maybe I'm unusual in that I felt so good at first, and I want to get there again, and I'm willing to stick with the diet through this rough time to get back there. Focus on your goals. Mine are to heal and feel good. Get some support (here is a good place). Vent when you need to (here is also a good place). Drink lots of water to say hydrated. Things look and feel worse when you're tired, so get as much rest as you can (not easy when you work and take care of a family). Just hang on and don't give up.

This is exactly what has happened to me. Feeling great the first 3 weeks but since Sunday I've been back to square one. I suspect I got glutened on Saturday night, I had risotto, totally forgetting that if they were using a commercial stock it probably had flour in it. If it's not that, I think it's this gluten-free bread I bought. I had it week 1 & 2 and was fine. Then I had a week without it and went back on it 2 days ago. That is my other suspicion. Will just have to battle on.

Chrisco Apprentice
Chrisco
Posted
  • Author

Thanks for all the comments. It's so easy to get discouraged. I have been really careful but I know it is not possible to be perfect on the diet especially for a beginner. I am just craving wheat so badly and it's so hard not to eat it when the diet is not making you feel better. I have had to be strong for so long and sometimes I just need to have a pitty party. Thank you for the advice and for letting me have a moment of weakness without judgement.

Jestgar Rising Star
Jestgar
Posted

We all need that pity party now and again. Somehow taking a break from being strong lets you be strong again for the next challenge.

chocolatequeen Newbie
chocolatequeen
Posted

I am new to this website as well and am finding it sooooo helpful. Its just comforting to know that i'm not alone with some of the issues I face. I have been gluten free for 6 months now and still am far from feeling 100%. I have good days and bad days still. I do not know how long I had Celiac before I was diagnosed. I am thinking about trying to eliminate soy and dairy as well to see if I feel better, but eliminating soy is so hard, its in EVERYTHING!

bluebonnet Explorer
bluebonnet
Posted

don't give up ... it will take much longer than a month! definitely agree with others about checking different sources for possible contamination. i'm into my 2nd month and have been glutened accidentally 3x's and feel miserable!! now i have to "start over" ... which will be the story from here on. try to stay positive and be extremely careful with food and non food products.

best wishes and hope you 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
      131,601
    • Most Online (within 30 mins)
      7,748
    rita jean
    Newest Member
    rita jean
    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

    • Wheatwacked
      Potential celiac need advice

      By Wheatwacked · Posted

      Yes.  Now, if you hit your finger with a hammer once, wouldn't you do your best not to do it again?  You have identified a direct connection between gluten and pain.  Gluten is your hammer.  Now you have to decide if you need a medical diagnosis.  Some countries have aid benefits tgat you can get if you have the diagnosis, but you must continue eating a gluten-normal diet while pursuing the diagnosis. Otherwise the only reason to continue eating gluten is social. There are over 200 symptoms that could be a result of celiac disease.. Celiac Disease and Non Celiac Gluten Sensitivity  both cause multiple vitamin and mineral deficiency.  Dealing with that should help your recovery, even while eating gluten.  Phosphatidyl Choline supplements can help your gut if digesting fats is a problem,  Consider that any medications you take could be causing some of the symptoms, aside from gluten.        
    • trents
      Potential celiac need advice

      By trents · Posted

      Welcome to the forum, @Ben98! If you have been consciously or unconsciously avoiding gluten because of the discomfort it produces then it is likely that your blood antibody testing for celiac disease has been rendered invalid. Valid testing requires regular consumption of generous amounts of gluten. The other strong possibility is that you have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms with celiac disease but does not have the autoimmune component and thus does not damage the small bowel lining. It is 10x mor common than celiac disease. There is currently no test for NCGS. Celiac disease must first be ruled out. Some experts in the field believe it can be a precursor to the development of celiac disease. Having one or both of the primary genes for developing celiac disease does not imply that you will develop active celiac disease. It simply establishes the potential for it. About 40% of the population has the genetic potential but only about 1% develop active celiac disease. 
    • Ben98
      Potential celiac need advice

      By Ben98 · Posted

      TTG blood test and total IGA tested on many occasions which have always remained normal, upper GI pain under my ribs since 2022. I had an endoscopy in 2023 which showed moderate gastritis. no biopsy’s were taken unfortunately. genetic test was positive for HLADQ2. extreme bloating after eating gluten, it’ll feel like I’ve got bricks in my stomach so uncomfortably full. the pain is like a dull ache under the upper left almost like a stitch feeling after a long walk. I am just wanting some advice has anyone here experienced gastritis with a gluten issue before? thank you  
    • Wheatwacked
      Unusual bright yellow but odourless discharge

      By Wheatwacked · Posted

      "Conclusions: The urinary iodine level was significantly lower in women with postmenopausal osteoporosis, and iodine replacement may be important in preventing osteoporosis"  Body iodine status in women with postmenopausal osteoporosis Low iodine can cause thyroid problems, but Iodine deficiency will not show up in thyroid tests.  Iodine is important for healing, its job is to kill off defective and aging cells (Apoptosis). Skin, brain fog, nails, muscle tone all inproved when I started taking 600 mcg (RDA 150 - 1000 mcg) of Liquid Iodine drops. Some with dermatitis herpetiformis, Iodine exacerbates the rash.  I started at 1 drop (50 mcg) and worked up to 12 drops, but I don't have dermatitis herpetiformis.
    • cristiana
      How long does it take to gain weight?

      By cristiana · Posted

      That's great news, you can do this.  Let us know how things go and don't hesitate to ask if you have any more questions. 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.