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Is my Celiac gone?


GJC
Go to solution Solved by knitty kitty,

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GJC Newbie

I'm 16. I was diagnosed with Celiac when I was 3 years old, they used a scope. I had been having a lot of pain, and after taking on the gluten free diet, I felt better and grew better. I know it may be risky, but I've been eating gluten for about 2 years now without any Celiac symptoms. I still follow my gluten-free diet most of the time, but when I don't I feel fine, and my stomach does not hurt afterwards. I am, however, often very tired/fatigued, but I don't know if that relates to my diet or not. I would like to see if anyone knows anything about Celiac going away? I've never heard of it before, but I just don't see why I wouldn't be feeling this way if it's not gone. Thanks!


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trents Grand Master

Welcome to the forum, @GJC!

Celiac disease is baked into the genes. It never really goes away if you were diagnosed correctly at 3 years old. There are occasional reports of celiacs who seem to go into remission for a period of time but eventually there is relapse.

But the thing you need to understand is that the symptoms experienced with celiac disease vary greatly from person to person. Many celiacs do not experience gut pain, diarrhea, vomiting or other "classic" symptoms when they consume gluten. We call them "silent" celiacs. But they may have other symptoms such as fatigue, brain fog, headaches or joint pain. There are over 200 symptoms that have been identified with celiac disease. And "silent" celiac disease may not not remain silent. Damage to the villous lining of the small bowel can progress silently but in time reach a critical point where gut pain and other more classic symptoms begin to manifest themselves if gluten free eating is not practiced.

You are very young and your body is very resilient. It can take a lot of abuse but if you don't take care of it you will eventually regret it.

Do you have access to the medical records that outline the testing that was done at the time of your diagnosis? It would be worth looking into to make sure testing was done properly in order to arrive at a reliable diagnosis.

  • Solution
knitty kitty Grand Master

Welcome to the forum, @GJC!

No, Celiac doesn't go away.  With us, every time we eat gluten, our immune system revs up, increasing inflammation and causing collateral damage.  

Every time we eat gluten, antigluten antibodies attack the gluten, but also the cells of our bodies.  In the stomach, the parietal cells produce the Intrinsic Factor which binds to Vitamin B12 so B12 can then be absorbed in the small intestine.  When damaged by the antibodies, parietal cells cannot make the Intrinsic Factor and B12 doesn't get absorbed.  If we become depleted in B12, we cannot make healthy red blood cells and this can cause B12 deficiency anemia.  Fatigue can be a symptom of low B12 or B12 deficiency anemia.  

Those antigluten antibodies also damage the villi lining the small intestine.  The villi absorb nutrients from our food, sort of like anemones filtering seawater.  Damaged villi cannot absorb essential nutrients from our food and we can develop nutritional deficiencies.  Malnutrition is the collateral damage.  Our body cannot function properly if it doesn't have enough nutrients.  

We need the eight essential B vitamins, Vitamin C, and four fat soluble vitamins, A, D, E and K, and minerals, like calcium, iron, magnesium, zinc and a bunch of trace minerals.  Iron deficiency can cause iron deficiency anemia which results in fatigue.  Deficiencies in any of the eight B vitamins can cause fatigue.

Vitamin D regulates the immune system, lowers inflammation, and helps produce hormones.  Vitamin D is important in developing bone density especially in the late teens to early twenties.  Consequences of not absorbing sufficient Vitamin D can result in osteopenia and osteoporosis when older.  Low Vitamin D can also result in hair loss, depression, menstrual irregularities, obesity and fatigue.  

Our body can make its own opioids.  That's why your toe quits hurting after you stub it.  We have opioid receptors throughout our body, including in our digestive system.  Gluten can attach to the opioid receptors in our digestive system.  We also have opioid receptors in our brains.  Gluten that escapes from our digestive tract into the bloodstream can attach to these brain receptors resulting in brain fog and fatigue.  These opioid receptors in the brain don't work the same in very young children as in adults.  This explains why you don't have tummy aches like a three year old. 

Take care of your future self by eating a healthy nutrient dense diet now.  Count your blessing that you were diagnosed so early in life.  

It can be tough, but we'll be cheering you on!  

Best wishes

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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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