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Decades Of Suffering From Celiac And Finally Diagnosed - Will I Really Heal?


Newbee

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Newbee Contributor

I had my biopsy this week and the doctor said he could see the destruction in the intestines so diagnosed it as classic celiac. Look like I've had this my entire life as there have been symptoms all along (even when I was a baby). I'm 37 and I've heard the longer you've had it the longer it will take to heal. I've also read some of the newer medical journal articles where they are finding people who have had it a long time are not necessarily healing all the way. I'm curious to know from others who've had the disease for decades how long it took them to heal and if they feel that they have healed completely. Also did you have complications along the way in healing (like developing other food sensitivities)? Thanks!


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ravenwoodglass Mentor

I had celiac from the time I was around 5 and wasn't diagnosed until I was in my midforties. I was very close to dying by the time I was finally diagnosed but I did heal. In some ways I healed quickly, my migraines and constant D ending within a couple weeks gluten free but some of the other damage like neuro problems and arthritis took quite a bit longer. My arthritis took about 6 months to go into remission completely and by that same mark I was able to walk without canes although true complete healing of my nervous system and brain did take at least a couple years.

Poppi Enthusiast

I will be 35 in a few days and was just diagnosed in April. I can remember being sick as far back as age 4 and 5 and my health had really deteriorated over the past couple of years to the point where I was facing being in a scooter by 40 at the latest.

My stomach pain, nausea and fatigue started to go away immediately. I still have a time in the afternoon when I am really tired and need to put on a movie for the kids and rest but other than that I feel like a new person. I am kayaking and hiking every week, regaining an intimate relationship with my hubby, taking my kids to playgroups and other stuff I haven't done in years if ever.

My joint pain has decreased by at least 80%, my energy is great, I am sleeping without pills for the first time in a few years, my skin rashes were gone within a few weeks.

Life isn't perfect but I am personally amazed at how fast I healed.

jebby Enthusiast

I was diagnosed last year when I was 33 after having symptoms for at least 15 years. But, I think it all started when I was 8 or 9, because I remember having a really itchy rash all over my back and shoulders which no one could diagnose (probably DH) and my abdomen was bloated all of the time. It took about 9-10 months of being gluten free for my body to heal. In the first few months I had a lot of accidental glutenings and my symptoms from gluten exposure would be much more severe than they had been before being gluten free. I have been gluten free for over a year now and I feel great. I no longer have chronic stabbing abdominal pain and bloating, lactose intolerance, anemia, vertigo, arthritis, bad canker sores, periods of overwhelming fatigue, and my hair has all grown back! Although I am "super sensitive" in terms of reacting to gluten, the only other intolerance I've noticed is to quinoa. If I eat quinoa, I have identical abdominal pains to when I eat gluten, but none of my other symptoms occur (thankfully). I can eat dairy now without a problem, but that was not until about 3 months after going gluten free.

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    • Colleen H
      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
    • Jmartes71
      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
    • Russ H
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