How long did it take to get symptoms

Question

TL;DR: I know that everyone’s is different, but tell me about how your gluten challenge went. How long did it take to get symptoms and what symptoms did you notice first? Even if someone has a similar story, I want to hear your story too. I’m thinking about quitting and just going back to GF.

New to the group. Was increasingly sick for two years and then while pregnant after many failed doctor visits I connected my symptoms to Celiac, but since I couldn’t be tested at that time I just cut gluten. After a month or so I started feeling much better, but I knew that eventually I’d have to do the gluten challenge. I’m two weeks and two days in now. I started having doubts when I wasn’t immediately sick, but yesterday the exhaustion and lack of motivation came back and today it’s worse. I had more energy three days after having a baby than I do now, or did before cutting gluten. I have other symptoms to a mild degree, but this is my first clear symptom since starting the GC. Should I hold out for a diagnosis or just go back to feeling good now so I can enjoy my summer and new baby, and be there for my 6-year-old?

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Stefi 3 years 5 Answers 282 views 0

Answers ( 5 )

  1. What was your diet wheb you went gf… if you were having gf food like boiled chicken and vegetables of course you will feel better any human would… be ause eating healthy is good for everyone not just celiac… but if you will go for gf without being celiac I aint sure it us healthy….

  2. It’s a hard call to make in my opinion. I had to go gluten free when my son was 6 months old and nursing. He was almost 2 when I stopped nursing and was able to try eating gluten. During the time I was gf, my lactose intolerance was better, my skin cleared up and I didn’t get random stomach aches. I tried eating gluten and would get horrible headaches, become terribly tired and would become constipated. So I stayed gluten free. It made me feel better and our house was already gluten free for my son. I was also pregnant with my second kiddo. After she was born, I still continued to stay gf. I accidentally glutened myself recently and felt horrible- headache, beyond tired to the point that’s morning coffee didn’t do a thing, and constipated. I also had brain fog and couldn’t focus or concentrate for at least a week. It was awful. I know being gf makes me feel better. I do not plan on doing a challenge and feeling awful just for a diagnosis. We did just draw labs on my 2 year old yesterday to test for celiac and are waiting the results. She has been eating gluten only at daycare for almost a year and I will actually be really surprised if her testing comes back negative. Personally, I would rather feel good and enjoy life than make myself miserable just for numbers on a test. I know that many will disagree with this, and that is ok. Just sharing my story and my opinion.

    I hope you figure out what is best for you and your family!

  3. I have linked my symptoms to celiac and have been referred to a GI Dr for testing after having an iron infusion but the wait list is long….One day I woke up felt the worst I have ever felt then decided to go gluten free and that was 7 months ago I feel so much better except for my rash…Now when I finally get into see a GI I’m dreading going back to 4-6 weeks of gluten so I am researching ways to avoid it, I have read I can get a biopsy of my rash to see if it is DH associated with celiac and with a positive blood test they can diagnose it, I was also going to get tested to see if I have the gene…I understand how you feel but it is your choice . My opinion you have come this far….how much longer do you have to eat it for? Maybe try to hang in there…is this for blood test? I did read someone just ate a little gluten everyday all she could handle and still tested positive….but for a biopsy of the small intestine I think you need to eat way more like 4 pieces of bread a day ? I don’t know If I could handle it so you have done well to come this far but I would totally understand if you went back gf….It’s such a hard decision..

  4. I have been sick my entire life (my parents have told me even as a baby I was ill.) Our son got really ill about 15 months. It took about three months to figure out what was going on. He had severe brain fog, bloated belly, extreme lethargy, vomiting, diarrhea. At first we were told they thought he had a brain tumour his brain fog was so bad. Then he was misdiagnosed with leukaemia. Minutes away from his bone marrow procedure the doctor came and told us there was a lab error with two or the blood tests they had run previously and he in fact did not have leukaemia. Six weeks later we found out he had celiac. His numbers were over 5000- wouldn’t even register they were so high. My husband and I went gf with him and I have never felt better. It was like we were meeting him for the first time at 18 months. He was a completely different kid.

  5. I totally understand where you’re coming from. I’ve been gluten free for over 6 months now. I was having horrible bloating and pain (enough to make me look several months pregnant) as well as anxiety attacks several times a week. Brain fog, depression, and aches were it too. After being GF I started feeling so much better. I had been sick my entire life and had just thought that it was the normal way people felt. I found out I had a wheat, barley, and rye allergy. I am not able to do a gluten challenge and that’s been really hard for me. One on hand, I know that being GF is helping me, but on the other hand, I feel like I need to have a definitive answer about celiac. I’m going to do the genetic test and then decide if I want to risk an allergic reaction for the gluten challenge.

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