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Did any of you ever get discouraged that your symptoms wouldn't go away?


glutenkid

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glutenkid Rookie

I've posted about this before, but I'm about 14 weeks in and have seen very little improvement. Did any of you take a long time to feel better, and do you think I should cast my doubts aside?


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Airchee Rookie

Hello

I was diagnosed Dec 15 of last year and went totally gluten-free the next day. I actually got worse before I got better - it's a steep learning curve - but now, 4 1/2 months later I'm finally seeing improvement.  Hang in there. 

rarchy Apprentice

I was diagnosed with celiac very recently and so have only been gluten free for 5 weeks and was wondering why I haven't noticed much difference (just because I had read stories about people who noticed a huge difference after 1 week). My digestion has improved a little (less constipated, more regular and less bloat/gas!) but other than that nothing else.... I am glad to know I am not alone in not noticing anything, and also knowing how long it has taken you guys I will try not to get depressed if I still don't notice much for a few months!

Fbmb Rising Star
On 4/28/2017 at 9:05 AM, glutenkid said:

I've posted about this before, but I'm about 14 weeks in and have seen very little improvement. Did any of you take a long time to feel better, and do you think I should cast my doubts aside?

Oh yeah. I'm 6 months in and still have bad days, even though I know I'm not eating gluten. It takes a long time to heal. I have been on here a lot in the past 6 months venting because I didn't feel good. I just posted today about how tired I still am. Everyone has basically said the same thing - give it time. Be patient. It can take a long time. Some people said it can take a year. Hang in there.

TexasJen Collaborator

Yes!  I never really had GI symptoms, but I did have palpitations and restless leg syndrome from anemia.  These went away within the first month. But myalgia and joint aches aren't better after 1 year.  Waiting to get my antibodies re-tested and see if they're negative.....

KKJ Rookie

This is not uncommon. When you have celiac, your gut has been damaged and needs to heal. While going gluten free helps many fairly quickly, for others the journey to healing is a bit longer. The worse shape your gut is in at diagnosis, the longer healing can take. I noticed good results for the first 2-3 months and was eating mostly paleo because I realized I just was not digesting ANY carbs well, but then improvement leveled off. I found a nutritional therapist, NOT a dietician or nutritionist. A nutritional therapist is different training, food as medicine etc. and focuses on healing the gut. She also had celiac and was a wealth of info on the healing patterns of different folks. She suggested the GAPS diet for a while. So, I went through GAPs intro and then did full GAPS for about 7-8 months. That was exactly a year ago and I am just now able to put back rice, blue corn (yellow still a problem) and, in moderation, tapioca flour. I feel GREAT, but it has taken time. My suggestion is find a good nutritional therapist. If you are still eating LOTS of carbs, your gut may not be able to digest them. Does it take discipline? Yes. Does it mean you may have to learn to cook? Probably. For me, feeling great and being healthy is worth it's weight in gold and although I do get weary of always cooking, it's WORTH IT! Most packaged gluten free stuff (especially cookies etc) is truly not real good for you and will not help you heal. Be sure you are taking a good quality probiotic as well. MegaFood's Mega Flora is very good and safe for celiacs.

icelandgirl Proficient

Hi glutenkid,

Yes, I was very discouraged for a while.  I heard about people feeling better as soon as they went gluten free and couldn't understand why that didn't happen to me.  

For some of us it takes much longer than others to heal.  In the first year after diagnosis I had a lot of ups and downs.  It was really rough at times.  This board was so helpful to me at that time because I was scared that I would never feel good.  

It really took about a year to feel pretty good for me.  Now at 3 years I still see improvements happening!  It can take the body a long time to heal from years of damage.  You have to be very patient.

Try to eat a diet rich in while foods.  Avoid eating out for a while.  Make sure that you've been checked for common deficiencies like iron, B12 and D.  Most of all, be good to yourself.  You will heal with time!

((((Hugs))))


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    • cristiana
      Karen, welcome to the forum. Another thing to add:  Belly bloat can persist if you are lactose intolerant, a situation caused by coeliac disease or it can simply be a stand alone condition.  In the case of coeliac disease, it could be your damaged gut cannot break down lactose efficiently but, in time, once the gut heals, your lactose intolerance and bloating should improve.  You might also find it helpful to stay clear of certain high fibre foods for a while, perhaps keeping a food diary to see if any are causing you to bloat a lot or give you stomach pain.  Lentils and soya were an issue for me in the short term, while I was recovering.  Also, are you taking iron - that can really hurt your belly and in my case it added to the bloating. The other point I wanted to make is has your doctor looked into any other reasons for your belly bloat.? There are a number of other gastric conditions that can result in a bloated belly.  A blood test and an ultrasound to check for possible gynaecological issues could also be something to speak to your GP about. It took me a few months for my bloating to subside, but the journey which involved a few tests along the way to ensure nothing else was was worth it.   Cristiana
    • badastronaut
      Thanks very much for the in depth reply!!! I'll discuss it with my doctor next week!
    • knitty kitty
      Hello, @badastronaut, I reread your last post on your previous thread... "Had some new bloodworks and an echo done because I still have problems with my stomach. According to my latest bloodworks I'm still negative for celiac and still low on zinc (even after supplementing it for quite a long time), I'm low on folic acid now too and my bilirubin is quite high (2,5 and 0,6). My ALT is also slightly elevated. I have been doing a gluten free diet quite strict although I did eat some gluten in the previous weeks.  "Could my blood result be this way because of gluten sensitivity and me being not strict enough? My echo showed no problems with my liver or pancreas. My bile ducts were fine too (although I don't have a gallbladder anymore).  "What to do??? Could this be gluten related?"   Your bilirubin is high.  The liver breaks down bilirubin.  The liver needs Thiamine to break down bilirubin.  Without sufficient Thiamine, bilirubin is not broken down and escapes into the bloodstream. High levels of bilirubin suppress the immune system.  High levels of bilirubin suppress the production of white blood cells, including anti-gluten antibodies.  The suppression of your immune system by high bilirubin could be the explanation for false negative Celiac antibody testing.  Thiamine is needed for antibody production.  Thiamine deficiency can cause false negatives on Celiac antibody tests.  If you are not making a lot of antibodies, you won't have much damage to the small intestine.   Your ALT is high.  The liver produces ALT.  When the liver does not have sufficient Thiamine, the liver produces more ALT that escapes into the bloodstream.  Elevated ALT is seen in thiamine deficiency. Your Lipase is high.  Lipase is produced in the liver and pancreas.  More Lipase is released by both in thiamine deficiency. Your gallbladder has been removed.  Gallbladder dysfunction is common in thiamine deficiency. Your Zinc is low.  Zinc absorption is enhanced when Thiamine is present.  Zinc is not absorbed well in thiamine deficiency. Your Folate is low.  Celiac Disease causes malabsorption of all the essential nutrients we need for health, the eight B vitamins, including Thiamine, the four fat soluble vitamin, Vitamin C and minerals like Zinc and Magnesium.  Thiamine stores can be depleted in as little as three weeks or even as quickly as three days.  Thiamine deficiency symptoms can wax and wane depending on how much thiamine is consumed that day.   If a high carbohydrate is eaten regularly, additional Thiamine is needed (500 mg per 1000 calories). Anxiety and depression are symptoms of thiamine insufficiency.  The brain just thinking  uses as much thiamine as muscles do when running a marathon.   I have had thiamine deficiency symptoms like you are experiencing.  My doctors did not recognize the symptoms of thiamine deficiency.  They just prescribed pharmaceuticals to cover up the symptoms which only made things worse.  I had a lot of nutritional deficiencies.  I ended up getting a DNA test to check for known genes for Celiac.  I have two Celiac genes.   Have you had a DNA test for Celiac genes?   I took Benfotiamine, a form of thiamine that promotes intestinal healing, and a B Complex to correct my deficiencies.   High doses of thiamine need to be taken to correct deficiency.  Talk to your doctor about administering thiamine intravenously.  Thiamine is safe and nontoxic even in high doses.  Thiamine is easily excreted in urine if not needed.  Improvement of symptoms should be seen within a few hours to a few days.  No harm in trying.  Process of elimination, etc.   Talk to your doctor and nutritionist.  Testing for nutritional deficiencies should be done before taking vitamin supplements, otherwise the vitamin supplements already taken will be measured.   I hope this helps you on your journey. References: https://pmc.ncbi.nlm.nih.gov/articles/PMC8451766/ https://pmc.ncbi.nlm.nih.gov/articles/PMC6662249/#:~:text=CONCLUSION%3A,in men than in women. https://pubmed.ncbi.nlm.nih.gov/24923275/ https://pmc.ncbi.nlm.nih.gov/articles/PMC6040496/ https://pmc.ncbi.nlm.nih.gov/articles/PMC3772304/#:~:text=Based on the patient's history,were also no longer present. https://pmc.ncbi.nlm.nih.gov/articles/PMC10682628/#:~:text=Benfotiamine (Fig.,]%2C [62]].  
    • James47
      Hey everyone I hope all are well and having a good 2025 so far. I am 50 this year and I only got diagnosed with celiac in June 2023. I have followed my diet to the letter since and they said after so many years undiagnosed it would take a long time to recover. Although I feel I have lot more energy and health and wellbeing is a lot better I still have severe gluten belly even though I work out daily and have a physical job. Any advice or info of anything else I can do would be greatly appreciated 👍 👍 
    • trents
      Welcome to the forum, @TexasCeliacNewbie! The test results you posted strongly point to celiac disease. It is likely that your physician will want to perform an endoscopy with biopsy of the small bowel lining to confirm the results of the celiac antibody bloodwork results you just posted. It is important that you not cut back on gluten consumption until the endoscopy/biopsy is complete, assuming, that is, one is forthcoming.  Can you post the actual reference ranges used by the lab for the tests to determine positive/negative/normal/high/low? Scales used by these labs are different from one place to the other so the raw numbers don't mean much without the scale used by the lab. There aren't industry standards for this. By the way, you probably won't be able to edit the original post so please post the extra info in new post. May we ask about the cancer you mentioned? There are some things that can elevate the antibody test scores, at least mildly, besides celiac disease.
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