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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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      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
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