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Still Sick

Chrisco

By Chrisco
in Coping with Celiac Disease

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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. :(

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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.

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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?

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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.

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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

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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.

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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.

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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.

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Chrisco Apprentice
Chrisco
  • Author
Posted

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.

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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.

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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!

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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! :)

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    • trents
      Waiting for urgent referral.

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      Wow! Fascinating info. Thanks so much! I really appreciate the guidance. @Spacepanther Over the years I have had rheumatologists do full lab work ups on me. They told me they had screened me for arthritis, lupus, and Lyme disease (all negative). In addition to joint pain and stiffness I had swelling in both knees that later moved to my elbow as well.  I also experience stiffness and pain in my neck and shoulders when it flares. I vomited fairly often growing up, but there wasn’t a real pattern to it and I didn’t know it wasn’t normal (thought people caught stomach viruses often).  I don’t usually have stomach symptoms immediately after eating gluten that I notice.  The only other joint condition I know of is fibromyalgia. Good luck! Hope you can get it figured out. I only assumed my joint symptoms were due to the celiac’s because it is under control for the most part on a gluten-free diet.  The rheumatologist also mentioned that some inflammatory/autoimmune diseases can be slow-moving and not detectable until they progress.
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      Joint swelling when ill even on gluten-free diet

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      @Spacepanther, I found these articles about the connection between Celiac and joint pain. Musculoskeletal Complications of Celiac Disease: A Case-Based Review https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10201087/ And   Intestinal microbiome composition and its relation to joint pain and inflammation https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6814863/ And The gut microbiome-joint connection: implications in osteoarthritis https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6903327/ Sounds like it's time to change the diet to change the microbiome.
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