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mslee

The First 3 Months After Dx

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Month 1 -

Sick as a dog, lived off what felt like baby food. Apple Sauce, broth, rice, soft bland veggies, chicken breast, chicken breast, chicken breast. Lots of fruit until yeast became a problem. Nothing greasy, nothing spicy,no citrus, no dairy, no juice, careful not to bend over or sleep after eating. (those last 2 helped alot) Got rid off all wheat products in my home, all seasoning, sauces with questionable ingredients, or MSG.

Tried substitute flours but something in them was not ok for me.

started to feel better and better everyday! Better than I ever had in my life in fact!

Month 2 -

Messed up, I was feeling so much better slipped up on some spicy foods, a little dairy. Sick again. Back to the "baby food"

Month 3-

Started to feel better again but feeling sluggish, have those dizzy days, seems like there is something I have missed. Working on finding it. Soy was a big one, thats out for sure. Soy milk out, Rice milk too risky thats out too. Still looking for hidden sources.

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I'm just coming into my third month and would pretty much echo all you've just said!

Good days, bad days... sometimes good mornings and then terrible evenings (like today, for example!)

Keeping a food diary has helped me stay focused, as has the help of my fantastic family.

One very undesirable thing about the whole process is the paranoia!... 'do I really have this disease?'... 'will I ever feel better?'...'do I feel worse today or am I imagining it?'... 'are my hands contamintated now I've touched that?'... 'what was it in that meal that made me feel like this?' etc etc!

:rolleyes:

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I am also 3 months into gluten avoidance. I already knew that I had an issue with candida and had spent several months prior, trying to sort this out. As I got into the gluten avoidance I discovered that cashew nuts and soya were also a problem.

My interest is quite how to track the reduction and change in the symptoms and what they mean. Improvement in symptoms are an obvious way to do this, however given the time scales of some of these, I am looking for something that acts as a consistent means to measure progress or deterioration.

My symptoms are skin rashes, stool problems, weight loss, general unwellness, susceptible to cold, infections, hives. I find it difficult to take each of these and use them as a barometer for my progress. I understand that the skin will take up to 2 years to clear, and already I can see some improvement, however I have flareups and cant figure out if this is part of the healing or because I have eaten something with gluten in or I am reacting to some other food. Weight loss appears to have stopped and am now gaining, but this is also inconsistent over short periods (days and weeks). Infections is hard to tell, my susceptibility to cold is also inconsistent but I cannot see any definite improvement. My stool is probably the best indicator of my intestinal healing, based upon color, fat content, bulk, looseness, smell, frequency.

I also have some psychological/emotional changes. I think I was preoccupied with not knowing what the issue was and constantly looking, now I am pretty sure gluten is the major underlying issue. There is relief as well as a positive thought about being healthier and fitter, I might be younger at 52 than I was at 45. This is all good, however I also feel more apprehensive and wonder if this is biological or psychological. I know that gluten can cause some neurological changes, does the withdrawal also produce some kind of chemical change?

Has anyone else pondered the uncertainty of recovery in this way, and have domments on my experience, or perhaps a different experience?

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Today is week 5 and I did something I've not done in years. I ran 100+ yards. My tennis shoes were not too heavy for my feet either.

Here is my progress so far. Mind you, I still feel crummy, but in the midst of that, I'm finding little personal victories in my war on wheat.

Week 1: Felt pretty rough from the endoscopy. Still eating oatmeal.

Week 2: Felt exactly the same as before. Cut out oats, dairy(allergy), egg (allergy). Added gluten-free multivitamin, protien shake, and Vitamin D, Calcium, Magnesium, Zinc vitamin. Constant eating started. Extremely thirsty and peeing alot. I thought I was going diabetic for a moment. Then it stopped after a few days. I woke up one morning and felt like I got more air when I breathed. (not a constant feeling).

Week 3: Walked up steps, driveway, back hill (only 1:10ft climb ratio) without needing to stop.

Week 4: Light/sound/smells became less irritating. Constant peripheral stars less frequent. Nerve jumps reduced. Cut back to 1 NSAID/day.

Week 5: Eliminated NSAIDS. Need to nap constantly is less compelling. Walked at a near normal pace 1/2 mile. Ran 100 yards! This one makes me feel like superwoman.

Moment to moment, I still feel pretty much the same as before gluten-free, but I know that if I've been able to get off the NSAIDS without huge neurological symptoms showing up again, that is a step forward. The muscles in my back seem more relaxed too. The crummy thing is that I've got some old joint injuries that are flaring up now that the NSAIDS are not reducing their symptoms either. I'm having a hard time balancing teaching DH about gluten-free and insulting his intelligence. We had a little battle at the grill with me wanting to cook my own steak and him feeling MANLY on his new grill. He told me he learned all about cross contamination and would be very careful and then promptly used the same tongs to flip my steak.

I don't really have digestive issues like so many others. I noticed a slight change almost immediately, but so what. It wasn't a problem before and not a problem now.

I feel like the changes are so small that maybe they are not real. I don't actually FEEL any better than before. Then again the little things I've noticed must mean something. I was really hoping for one of the immediate relief stories I've seen. Maybe that is more with the digestive end of things and less with the neurological end.

I hope you all are feeling well soon.

SGWHISKERS

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I don't really have digestive issues like so many others. I noticed a slight change almost immediately, but so what. It wasn't a problem before and not a problem now.

I feel like the changes are so small that maybe they are not real. I don't actually FEEL any better than before. Then again the little things I've noticed must mean something. I was really hoping for one of the immediate relief stories I've seen. Maybe that is more with the digestive end of things and less with the neurological end.

I hope you all are feeling well soon.

SGWHISKERS

I like the way you said you feel 'crummy' ! It's quite an approprite way to describe it!

I don't think anyone who has true celiac gets immediate relief upon going gluten free... the stuff takes a long time to work itself out of your system and your immune system needs to repair everything and start to let it's guard down.

Maybe immediate relief is felt more by those with gluten intolerance rather than celiac?

Personally, my symptoms were/are primarily digestive - bloating, constipation, cramps, indigestion, soreness (though there are many other issues too). I found the boating stopped the day I went gluten-free, the constipation took a couple of weeks. The stomach pain after eating still lingers but I think this is because my stomach and small intestine are still inflammed and trying to heal.

I have more energy than before, I don't snap at my family, I don't panic, don't feel like I'm going to fall over or be sick every five minutes!

tmb - I think there is some evidence to suggest people go though some kind of biological withdrawal after going gluten-free, i can't say this happened directly to me though, but I've seen others describe it on this board in the past.

Recovery is a very uncertain process, there are things you can do to make your self feel more certain though, like having a completely gluten-free area in your kitchen and your own kitchen untensils etc... I didn't do this at first and now I have I feel more relaxed. Try to eat only brands you are CERTAIN to be gluten free to avoid worrying about 'glutening' yourself. Also, maybe keep a note book of your daily reactions to foods and then work out which make you feel worse - include the date, times, physical/emotional feelings, bowel movements, skin reactions... It's not an exact science but I've found it very helpful!

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I've been gluten-free for one week and I am noticing improvements.

I am not nearly as bloated and puffy, and as a result I've lost about 5 lbs.

My stools are starting to sink to the bottom instead of floating and the oil slick is gone. I'm not as constipated.

I am not nearly as gassy as I was, which is absolutely amazing.

I don't have as much indigestion.

I am not as ravenously hungry to the point of overeating as I was.

Someone told me yesterday that I don't look as pale as I was, that I have good color again.

Emotionally, I feel good, knowing that this wasn't in my head, but see below...

Where I haven't noticed improvement:

My stomach still feels "sour."

I still have acid reflux at night.

I'm still pretty moody (but that might be PMS), and I am still frustrated over how to change my entire way of life.

I feel more tired now than I did before going gluten-free, although I wonder if that's a function of my body wanting to heal itself and the best time to heal is when sleeping.

I have a headache, but that might be from the gluten withdrawl...I remember this in the beginning when I tried Atkins 5 years ago (and felt better than ever once the first two weeks were over).

I've noticed that I've also been peeing a lot, I wonder if that's because I'm losing all the water I've been retaining. I've been having to get up at night to go to the bathroom, it's like I'm pregnant all over again!

I also wonder if I always overate to compensate for the lack of nutrients I was getting...I don't know...

Stacy

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I've been gluten-free for one week and I am noticing improvements.

I am not nearly as bloated and puffy, and as a result I've lost about 5 lbs.

My stools are starting to sink to the bottom instead of floating and the oil slick is gone. I'm not as constipated.

I am not nearly as gassy as I was, which is absolutely amazing.

I don't have as much indigestion.

I am not as ravenously hungry to the point of overeating as I was.

Someone told me yesterday that I don't look as pale as I was, that I have good color again.

Emotionally, I feel good, knowing that this wasn't in my head, but see below...

Where I haven't noticed improvement:

My stomach still feels "sour."

I still have acid reflux at night...

I still have that sour feeling in my stomach also, I guess it's where there is still inflammation. When I had my endoscopy they said the first part of my small intestine was very inflammed with nodulation and a small ulcer, I always get the sour knotty feeling about 30 mins to 1 hour after eating so I guess it's happening when it reaches all that sore stuff!

I have days where my energy is higher than ever, but I find if I do anything out of the ordinary like go out for an evening and stay up late or if my little boy wakes me up in the night a lot I'm totally pooped by the next day, it's like I don't have any extra resouces to keep me going.

I was eating constantly too, but never put on weight, in fact I lost weight and couldn't gain it again, I put on about half a stone since going gluten-free, which is ideal for me!

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Yes expecting a good year of healing time, moving into month 4

-less migraine headaches

-overall more relaxed, less stressed/agro

-digestive issues def. clearing up

-Joints are a little more achy, could be because consuming enough food has been a problem

-some new allergies have developed but I have Dr to help with that and should get better as I heal

there are always good days and bad days...and the risk for life of getting "poisoned"

(not really but thats what I call it because it makes me feel so cruddy!) :P

But don't the good days feel great!!!

amazing!

:D

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It's been interesting reading this post, and then reflecting back on the past year for me. I'll be gluten-free for one year next month. Wow, how time flies!!

In some ways, I felt better after one week. The daily headaches were gone. The constant nausea was gone. I by no means was energetic, but I stopped waking up exhausted. And then I went on my first run in months... wow, what a rush!

I've had ups and downs, but I always heard here that it really takes about a year, and now that I'm approaching a year, I can look back and see the wisdom in that. We are constantly learning new things; for me, I discovered that dairy was causing problems, too. And it wasn't until I eliminated dairy that I truly started to feel better. Sometimes I still get impatient with myself, because the will to do is there, but somedays I still don't have the energy. But those days are becoming fewer and fewer. I concluded, a few months back, this one thing that got me through some really rough days: I didn't get this sick over night, I will not get better over night.

Enjoy the good days, and even the bad. Because your body is healing, and before you realize it, you'll have many more good days than bad.

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I'm only six weeks into the gluten-free diet, but thought I'd chime in here anyway. It will be interesting to come back and read it a few months down the road. :)

Physically, there are a bunch of things I've noticed improvement on, but some things that have gotten worse or are still the same.

Noticed Improvements:

  • No more muscle twitching in my eye (had no idea that was related)
  • No more stomach gurgles unless I eat something super greasy or get glutened
  • Stools are returning to normal! (I never thought I'd be so excited about normal poop! LOL)
  • Mood swings are decreased, although irritability comes and goes
  • I've gained about 4 pounds (Awesome, since I hovered right around 100lb for a loooong time)
  • Frequent headaches are now almost non-existent
  • Frequent heartburn is now much less
  • Acne - my face has cleared up considerably! I still get occasional cystic acne, though no where near as bad as before

Things that have not improved or gotten worse:

  • Fatigue - I'm still super tired all the time. I frequently come home from work and take a 3-5 hour nap and sleep in on the weekends til noon or later (and my job is not that physically demanding)
  • Extremely dry itchy skin - it's a little better on my scalp now that I'm using gluten free shampoo & conditioner, but the rest of my body has not improved (and all personal hygene products are now gluten free)
  • Night Sweats - have seen no improvement here at all
  • Brain Fog - I guess I could say there's been a slight improvement, as I don't constantly feel like I''m in a fog, but bad days are really bad; so much that it's difficult to carry on a conversation sometimes because I can't think of the right words to use - almost like English is a foreign language on those days
  • Coordination/Balance - no improvement. Increased joint pain in hands, with loss of muscle coordination. Have trouble holding/controlling small objects (pens, toothbrush, etc). Can be standing still and suddenly feel like I'm about to fall over, or be walking from one room to another and have the feeling that I'm about to fall over - almost like someone pushed me or like I'm drunk (I rarely, rarely drink - so its not that! ;))
  • Still feel dehydrated most of the time, even with drinking a ton of water

Now, let's talk emotional stuff........no one else has really mentioned it, but it's playing a big part in my life right now. It comes and goes.

  • Depression/Anxiety - this is better, but not gone (will it ever be?). Days when I don't feel all that great, the depression seems worse. Anxiety is heightened with food uncertainties - invitations to dinner at someone ele's house has sent me into major freak out mode more than once. Thinking forward to Thanksgiving is causing anxiety for me.
  • Resentment - There are days when I resent that everyone around me can eat whatever the heck they want, but when I want a piece of chocolate cake or a brownie or slice of bread, I either have to travel to three different grocery stores or make it myself
  • Deprivation - kind of goes with the 'Resentment' above. I feel like there are so many things that I can't have (which of course I know is untrue, there are suitable replacements for most everything)
  • Temptation - this one hasn't been too bad, because I know how I feel when I eat something glutenous. Although, working in a coffee shop where we have a huge case of yummy baked goods and pastries certainly doesn't help me on a daily basis. I found myself thinking the other day "Well I'm off tomorrow, so maybe I could have something out of that case" - thinking that if I got sick, at least I'd be sick on my day off (even though I know it wouldn't be a 'one day' thing). I'm happy to report I've never given in, and that the voice of reason piped in and I didn't touch the stuff, nor will I.

So.......I don't know how much of the remaining symptoms are still my body 'detoxing', but I'm working with my doctor to rule out some other possible causes, just to be on the safe side.

I'll have to come back and update again in another month or so. :)

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Hopefully I'm not messing this thread up - I'm only 2 weeks gluten-free but so far I'm very impressed!

* Have not had D much at all...only tiny bits here and there.

* No gas, no bloating, no cramping! WOOHOO! (I am someone who spent the better part of the summer doubled over on the bathroom floor, sweating and praying for death)

* I have not had one of my chronic headaches at all! Hoping this continues!

* I've gained 2 lbs, which is good because I lost over 20 in the past couple months of D.

*RLS has not happened at all, even when taking antihistamines, which would ALWAYS bring on the crawlies

Still have a small amount of upper abdominal pain after eating, but it goes away within an hour and never gets to the point where I have to stop what I'm doing. I'm hoping this subsides over the next few months and am sticking to small meals to keep it under control. Have had NONE of the really low abdominal pain I always had before with D.

Still usually constipated but not nearly as bad as I used to be. Hoping this continues to normalize.

I HAVE NOT USED A TOILET PLUNGER SINCE GOING gluten-free!

I'm really getting strong urges to do a gluten challenge though....I am self-diagnosed (with significant family history) so I still wonder a lot if it's all in my head.

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