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If One More Person Says....

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adab8ca Enthusiast
adab8ca
Posted

you should start feeling better by now being gluten free (it's been a week)

I will scream.

a) I have few GI symptoms (except weight loss of 25 lbs in 6 months w/o trying)

b ) I have LOTS of neuro symptoms

c)The GI saw damage on the endoscopy that looked like classic celiac. He took the biopsy, but there was damage visible already.

I am thinking a week is a little short to expect much when I am probably still purging gluten from my system.

I wish I was one of those people that felt better in a week and so, it was totally conclusive but apparently,I am not. I felt no worse on gluten.

It makes me very discouraged and cranky.

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GlutenFreeManna Rising Star
GlutenFreeManna
Posted

It sounds like you're being realistic. A week is too short to get rid of all your symptoms, especially when they are neuro. Heck, I've been gluten free for 8 months and when I get accidental gluten it takes a week (sometimes longer) before my symptoms go away. So keep up the gluten free diet and ignore those naysayers.

Skylark Collaborator
Skylark
Posted

Time to practice scathing looks. :P

With your high TTG and damage, you're on a timeline of months. Don't let the idjuts get you down!

India Contributor
India
Posted

With your high TTG and damage, you're on a timeline of months. Don't let the idjuts get you down!

Hi Skylark - I think I've noticed elsewhere that you're pretty keen on good scientific evidence :) Can you tell me if you know of any research that supports this? I'm told my I had a very high TTG score (>1000, though I don't know how the UK scale compares to the US) and that my Marsh score was 2-3, though I don't know how this compares to other people. I'm wondering if this could explain my depressing lack of progress after 9 months.

Ahorsesoul Enthusiast
Ahorsesoul
Posted

Simple answer for them "Why in the world would you even think that?".

Skylark Collaborator
Skylark
Posted

Hi Skylark - I think I've noticed elsewhere that you're pretty keen on good scientific evidence :) Can you tell me if you know of any research that supports this? I'm told my I had a very high TTG score (>1000, though I don't know how the UK scale compares to the US) and that my Marsh score was 2-3, though I don't know how this compares to other people. I'm wondering if this could explain my depressing lack of progress after 9 months.

Here's a couple references for you. Coming back from Marsh 3, you're looking at maybe two years to really recover, and some people still have a little abnormal histology after five years.

Open Original Shared Link

Open Original Shared Link

Other things to consider are that some celiacs react to casein (milk protein) as though it were gluten and do not recover until they are casein-free. Others react to oats, so avoid those until you're feeling better. Also that 200 ppm Codex wheat starch available in Europe is not suitable for all celiacs. If you're eating that it may keep you from healing.

India Contributor
India
Posted

Here's a couple references for you. Coming back from Marsh 3, you're looking at maybe two years to really recover, and some people still have a little abnormal histology after five years.

Open Original Shared Link

Open Original Shared Link

Other things to consider are that some celiacs react to casein (milk protein) as though it were gluten and do not recover until they are casein-free. Others react to oats, so avoid those until you're feeling better. Also that 200 ppm Codex wheat starch available in Europe is not suitable for all celiacs. If you're eating that it may keep you from healing.

Thank you for this - I do appreciate it. I'm feeling pretty tired of worrying and messing around with my diet and wondering if I should just accept that recovery will take time. I'm also trying to ignore a couple of the scarier things in that abstract and focus on being glad I got myself diagnosed :)

I'm pretty strict about what I eat and already avoid oats and casein, though I think I have other intolerances too. I don't eat Codex either - I wouldn't have wanted to eat such messed around junk when I was healthy and you couldn't pay me to eat it now...

ps - Apologies to the original poster for hijacking this :)

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ravenwoodglass Mentor
ravenwoodglass
Posted

you should start feeling better by now being gluten free (it's been a week)

I will scream.

a) I have few GI symptoms (except weight loss of 25 lbs in 6 months w/o trying)

b ) I have LOTS of neuro symptoms

c)The GI saw damage on the endoscopy that looked like classic celiac. He took the biopsy, but there was damage visible already.

I am thinking a week is a little short to expect much when I am probably still purging gluten from my system.

I wish I was one of those people that felt better in a week and so, it was totally conclusive but apparently,I am not. I felt no worse on gluten.

It makes me very discouraged and cranky.

Go ahead and scream at them. You didn't get sick overnight and you won't heal overnight. You may also have some withdrawl for the first month or so.

You will heal but it will take some time. Some of my neuro stuff resolved pretty quickly, like in a couple months but some stuff took a lot longer. Nerves take time to repair.

dilettantesteph Collaborator
dilettantesteph
Posted

My gut issues did feel a lot better right away. Even the day after I stopped eating bread and Cheerios I felt much better. I didn't realize that my neuro issues had been caused by gluten until they went away months later. Hang in there.

My husband seems to think that getting better means never getting glutened again. It's been almost 3 years now. Ain't gonna happen.

cassP Contributor
cassP
Posted

yes! give it time! my gut issues take about 3 weeks to improve- but i think the gut may heal faster than the nerves, brain, and skin...

i-geek Rookie
i-geek
Posted

It sounds like you're being realistic. A week is too short to get rid of all your symptoms, especially when they are neuro. Heck, I've been gluten free for 8 months and when I get accidental gluten it takes a week (sometimes longer) before my symptoms go away. So keep up the gluten free diet and ignore those naysayers.

Exactly this. I mean, sure, some of my symptoms got better within a week (as in no more daily headaches), but the gut stuff took months to fully heal. It was a full two months before I could digest even lactose-free dairy again. Stick with it and you will eventually get relief. At the very least, you're not doing further damage to yourself so that's something.

sandsurfgirl Collaborator
sandsurfgirl
Posted

Oh man at one week I was still bedridden!

I overwhelm ignorance with facts and give them an education they never wanted! "It's an autoimmune disease that causes organ damage." The minute I say that they usually shut up. "My small intestine has been destroyed and attacked by my immune system so it takes time to repair and heal. There is no medication for it so I just have to hope my body heals all the damage that was done by being misdiagnosed for years and years."

All said with a sad guilt inducing look of course.

I hate to tell you, but it was 6 months before I started feeling pretty good most days. 7 months until I was having lots of days with pretty much no symptoms.

I was really really badly sick for about 5 months, although I had improvements for sure. My anxiety cleared up almost immediately and that one had gotten so bad it was almost debilitating.

I went through awful withdrawals. So hungry I could gnaw my own arm off if I didn't get food. For a few weeks I was having bowel movements of every sort like 10 and 12 times per day, I'm NOT kidding! It was awful. I caused such bad dehydration I had dizzy spells and sometimes couldn't leave the house. Had to drink plenty of Gatorade because the natural electrolytes made me really sick and keep on my water. If I didn't hydrate properly first thing in the morning I couldn't function all day long.

It was a roller coaster ride.

If you search on here and read old threads about withdrawal you'll see that whatever you deal with, somebody else has dealt with too.

There was a period about week 3 or 4 where I just couldn't eat anything without getting sick. Everything bothered my gut. Then it went away. I had all these other intolerances, but most cleared up except soy, that evil foul substance that causes me pain like a torture chamber.

So hang in there and give them what for if they start in with that nonsense. Would they say that to a cancer patient??????

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