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How Long Until You Declared Yourself 100%


sweetsailing

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sweetsailing Apprentice

I am about 6.5 months into being gluten free and I still continue to feel like I am coming up out of my hole.  Certainly, I noticed improvements in the first few weeks and along the way I feel like I keep turning another corner so to speak. 

 

At 6.5 months in, I haven't felt this good in at least 4 - 5 years.  So, I feel like I am in unchartered waters.  I don't even have a concept for when the improvements will end. 

 

Up until very recently, I haven't been able to tolerate multi-vitamin supplements.  They gave me D and felt like they just washed right through me without any benefit.  Finally, I am now able to take multi-vitamins and I think this is actually making a difference.  I did take Vit D and probiotics since day one and those were fine. 

 

I am exercising more and more now and I can't tell you how wonderful it feels to be appropriately sore in my muscles from working out as opposed to just hurting all the time. 

 

I am riding the "good train" and I don't know when it ends but I am liking where it is going. 

 

So, how long before you declared yourself 100% or maybe you haven't yet. 


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nvsmom Community Regular

I think I would put myself at 80% better. I was an undiagnosed celiac since babyhood, so I have a few permanent health issues that aren't going to improve, and a few others that I don't think will go completely (as there still hanging in, at a much reduced severity, after almost 2 years gluten-free.

GottaSki Mentor

For me, the damage caused by Celiac Disease will likely never be completely remedied -- but in many ways I am better than ever before in my life. 

 

My bones have replaced themselves these past five years with strong healthy bones -- no more premature osteoporosis. 

 

My tendons and ligaments are all functioning much better -- used to have knees that would pop out if the wind blew the wrong direction, etc. 

 

The plumbing is finally running a bit more smoothly :P

 

My gums are healthy :D

 

My skin, nails and hair are all wonderful :wub:

 

I have a few problems we are still working on, but overall I am healthier -- just need to figure out the last few remaining pieces of the puzzle -- and I will :)

Fenrir Community Regular

For me, the damage caused by Celiac Disease will likely never be completely remedied -- but in many ways I am better than ever before in my life. 

 

My bones have replaced themselves these past five years with strong healthy bones -- no more premature osteoporosis. 

 

My tendons and ligaments are all functioning much better -- used to have knees that would pop out if the wind blew the wrong direction, etc. 

 

The plumbing is finally running a bit more smoothly :P

 

My gums are healthy :D

 

My skin, nails and hair are all wonderful :wub:

 

I have a few problems we are still working on, but overall I am healthier -- just need to figure out the last few remaining pieces of the puzzle -- and I will :)

Yeah, I'm hoping mine improve as well.

 

I may have had this since I was a kid as I remember going to the ER multiple times as a kid with stomach pain that they never figured out. My joints feel shot, abdominal pain, headaches, plumbing issues..ect.

 

About 10 days gluten free and I feel some improvement already. Knees are not near as bad but still not good but it will take time and my headaches are pretty much gone already,

NatureChick Rookie

I think that you are going to have milestones for things such as completing the initial recovery phase, getting really good at avoiding cross contamination, no longer feeling deprived, being able to shop for groceries without even noticing that your shopping card is completely different than it used to be. And all of those will be steps in the right direction.

But there will also be times when some new health problem will arise, forcing you to play detective to figure out what might be the cause, deal with doctors who don't understand celiac, or make you worry about the damage that your body has endured and might not ever heal. I think that being prepared for these to pop up may make them easier to deal with when they do happen. 

But just reading Fenrir's comment makes me remember how wonderful my first month gluten-free was compared to the hell that preceded it. Which I needed because I'm in the midst of one of those new mysteries that I haven't solved yet.

GottaSki Mentor

Yeah, I'm hoping mine improve as well.

 

I may have had this since I was a kid as I remember going to the ER multiple times as a kid with stomach pain that they never figured out. My joints feel shot, abdominal pain, headaches, plumbing issues..ect.

 

About 10 days gluten free and I feel some improvement already. Knees are not near as bad but still not good but it will take time and my headaches are pretty much gone already,

 

Many things will improve gluten-free -- it simply takes time.  It often feels like a dance two steps forward, one step back -- but overall you are improving.  Like NatureChick, I believe acknowledging the victories -- small and large -- along with being prepared to handle the setbacks is important.

1desperateladysaved Proficient

I had 30+ years of celiac symptoms and I think my measuring stick is all messed up.  Once what I thought was normal, isn't normal.  I feel very much better than what I had been.  I am 2 years gluten free and still feel like I am in transition. I had a couple of big lurches ahead when I started digestive enzymes and when I cut out all food intolerances.  I felt very much improvement when my low ferritin was corrected.  We are in a race and I don't know where the finish line is.  In many ways I am already over 100%, but  I have some baggage.  I think 100% is an illusion like the horizon.  One can never really tell when they get there.  But in the case of celiac recovery, one can remember where they started and marvel at where they are now!

 

Dee


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notme Experienced

3 1/2 (well, almost 4!  wow)  years and i am still seeing improvements.  sooo many (seemingly unrelated) health issues that i struggled with have cleared up.  my skin is not an itchy mess, my vertigo is vertigone <see what i did there)  i have put on 22 lbs (!)  from 97 lbs to 119 and i'm still trying to gain about 5 more.  in my boobs HAHA   :P   i even had a constant headache that i didn't know i had until it disappeared.  all my vitamin levels except D are good :)  i don't take vitamin supplements, so my gut must be absorbing.  i don't wake up needing a nap  :D  feeling fine :)

 

i still slip up occasionally, but less and less.  i think.   :huh:  ;)

BlessedMommy Rising Star

I'm fortunate in that I caught my gluten issues relatively early. I believe that they were triggered during my 1st pregnancy when I was 23. I started cutting out wheat a couple of years later and after my TIA and hospitalization in 2010 (so age 27) it was gluten free for life for me.

 

I feel like my overall health has improved a lot. I'm still working on some issues, but definitely feel much better now than I did in my early 20's!

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    • trents
      I'm a little confused. In your second post you said, "but these symptoms have been ongoing for a long time before the pregnancy" while in your most recent post you say, "I was doing a lot better on the AIP diet. However, I was unable to do the full reintroduction process because I went off the AIP diet when I got pregnant and was experiences chronic nausea." CBC = Complete Blood Count. This is the typical bloodwork most people would have done routinely with an annual wellness checkup. I would include things like iron levels, various blood cell counts including reds and whites and other infection fighters. CMP = Complete Metabolic Panel. This would measure things like blood sugar, kidney and liver function, plasma proteins and various enzymes. Non cellular things that the body produces. Also typical of an annual wellness check. Have you tried cutting out dairy and oats? These two are the most common cross reactors in the celiac community. I know it must be tough trying to get adequate calories and nutrition when you are pregnant while at the same time eliminating foods that are good sources of those things.
    • Maura Gissen
      They did. I was doing a lot better on the AIP diet. However, I was unable to do the full reintroduction process because I went off the AIP diet when I got pregnant and was experiences chronic nausea. This is what makes me believe it's food related.  I do check all of my food products and supplements and I am very careful about them being gluten free and trying to stay away from corn starch etc. However, I am eating gluten free breads that sometimes have rice flour, yeast, etc. - I seem to do fine with these breads/bread products some days, but then am sick other days.  I have never really had any GI symptoms outside of bloating. My symptoms are dizziness, brain fog, and a general feeling of unwellness or malaise, sort of like when you're going to get the flu.  I have had a lot of bloodwork done over the last three years, but I don't recall doing the CBC, CMP, or a celiac-specific test recently. That's helpful so that could at least provide some insight to see if I'm still being exposed.  Do you see most individual with celiacs having to take a period of time away from even gluten free breads and other cross-reactive foods to let their guts heal? I'm not sure how restrictive to get with my diet again since it's so challenging. 
    • trents
      Did the symptoms commence after you discontinued the AIP diet? Have you checked all nutritional supplements and oral hygiene products for possible gluten content? Have you recently checked all the labels of purchased processed foods in your pantry to check for formulation changes that might have introduced gluten? Historically, when "glutened" did you have GI symptoms or were you a "silent" celiac whose symptoms were non GI. Is what you are experiencing now like what you were experiencing at the time of diagnosis? Have you had recent blood work done (CBC and CMP) and if so, were there any parameters out of norm? I know you have Hashimoto's but you say that is well controlled now? It certainly wouldn't hurt to get celiac antibodies rechecked. Because you are essentially gluten free I would not expect to see any big departures from normal levels but if there are even weak positives it could indicate you are getting glutened from some unexpected source.
    • Maura Gissen
      Hi Trent! Thanks so much for your warm welcome and questions! They do, but these symptoms have been ongoing for a long time before the pregnancy. However, it's hard for me to know what's a celiac response vs. a Hashimotos one. I haven't, maybe it's worth getting those checked again? 
    • trents
      Welcome to the forum, @Maura Gissen! Don't those same symptoms often come along with the territory when pregnant? And then throw in Hashimoto's.  Have you had your celiac antibody levels checked recently?
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