36 replies to this topic

[Em314]

When are your docs planning to have a follow-up blood draw to check how the antibodies to gluten are doing? You may also just plain still have gluten in your diet.

Are you still feeling some improvement?

[funkflex]

They did that end of January, antibodies had decreased significantly (halved themselves two times), and that indicates that everything is OK with the diet, according to the doctor.

There MIGHT be some improvement, but it's a little early to say... I HOPE so atleast.

[pricklypear1971]

It's going to take a whole to build up your activity level. When I started working out I'd nap every day. Took about 2 months to get past that.

My doc told me to exercise no more than every other day. That said, my routine is different from yours.

Since you take a short walk daily, is there a way you could add just a bit to that? Start with mild some isometric exercises? Just one exercise per week, every other day? It may help to strengthen your muscles and give you more endurance.

I would advise a good gluten-free multivitamin. Generally, it helps Celiacs. We're usually missing something.

Do remember that your muscle tissue, ligaments, joints have been deprived of nutrients and are for lack of a better word, damaged. So take it easy on them. From the sounds of it, they're probably atrophied to a degree.

I will not lie. Rehabbing yourself in celiac recovery is a challenge. It's painful. We all recover at different speeds. I've learned to preface my health status with "today", or "right now".

The first 6 months-year of gluten-free is rough. You're relearning everything, and everything is constantly changing. Just keep going forward.

[funkflex]

It's going to take a whole to build up your activity level. When I started working out I'd nap every day. Took about 2 months to get past that.

My doc told me to exercise no more than every other day. That said, my routine is different from yours.

Since you take a short walk daily, is there a way you could add just a bit to that? Start with mild some isometric exercises? Just one exercise per week, every other day? It may help to strengthen your muscles and give you more endurance.

I would advise a good gluten-free multivitamin. Generally, it helps Celiacs. We're usually missing something.

Do remember that your muscle tissue, ligaments, joints have been deprived of nutrients and are for lack of a better word, damaged. So take it easy on them. From the sounds of it, they're probably atrophied to a degree.

I will not lie. Rehabbing yourself in celiac recovery is a challenge. It's painful. We all recover at different speeds. I've learned to preface my health status with "today", or "right now".

The first 6 months-year of gluten-free is rough. You're relearning everything, and everything is constantly changing. Just keep going forward.

Thank you for the encouragement. Good to hear that it takes some time. I do some back strengthening exercises, some pushups and situps, about every other day. But its to definitively to soon to try any large muscle group exercises like the deadlift or similar. It's definitively a rough ride. I'm mot missing any vitamins according to the tests, so that shouldn't be the problem.

[cap6]

Your story sounds a lot like mine......
After going gluten-free my constipation became worse to the point where it was only an enema that would offer any relief. I was thirsty, thirsty, thirsty even getting up during the night to guzzle a full bottle of water. And tired, sleeping 10 to 12 hours a day. I had all vit levels checked...everything. Walking, prunes, more fiber, no processed foods, iron sups, B12 shots and on and on.
I am now at almost 3 years gluten-free (yeah!!) and feeling pretty darn good. This is just my thought..... but it just takes time. Time to heal. For so many years your body has been under attack and it needs time. Symptoms can change, reactions to different foods can change. It's all about healing. It sounds like you have done all of the right things, had all the levels checked and such.

Again, this is just my thought but sleep. Sleep as much as you need and heal. Your body is fighting to heal and that in itself is exhausting
.
Thirsty. Drink water. Lots. The doctor told me that I neede to drink more and I thought he was nuts. I mean, how much can one person drink?? He said that my body obviously needed more. At one point I drank as close to a gallon a day as I could. I (still) keep a jug in the refrig, refilling my sports bottle so that I can be sure to get my water quota. Thank goodness I like water but I know many people just don't. my partner is one that hates water. i don't get that. lol

Constipation....whew. That was my biggest issue and still plagues me to some point. I found a "cocktail" that worked for me and kept things moving (!). I drink aloe, take a probiotic,take powdered vitamins, drink an hebal tea for constipation. I was drinking the tea, which is really the only thing that worked, every night for about 8 months. Now I drink it about every three nights. I know that there are many that are opposed to taking a product to keep things "moving:, but my personal thought is that using something (as natural as possible) to keep things going is far better than the side affects of being backed up.

Guess that I am just trying to offer you some reassurance that it does and will get better. Someone on this board told me that the older you are when diagnosed and how long you have been suffering can make a huge difference on how long it takes to heal. Children can bounce back, adults take longer. For me the majic year was 2 years.

[pricklypear1971]

Thank you for the encouragement. Good to hear that it takes some time. I do some back strengthening exercises, some pushups and situps, about every other day. But its to definitively to soon to try any large muscle group exercises like the deadlift or similar. It's definitively a rough ride. I'm mot missing any vitamins according to the tests, so that shouldn't be the problem.

I don't advise weights at this point. Your soft tissue probably can't handle it. Google isometrics, Pilates, stretching and start there. Don't think you can't push yourself doing those? I dare you .

And regardless of what your labs say, you are deficient in vits/mins. They don't test for everything - there isn't a test for everything. That's celiac. Your intestines are not absorbing everything (if they were, you wouldn't have these issues). Try a multivitamin. Won't hurt you.

And if the exhaustion/constipation continues you need to see about Hashimotos testing for your thyroid. Just my $0.02.

I found progress happened slowly and became obvious overnight. I'd go weeks or months without feeling different. Then one day, whammo. Big step forward.

[funkflex]

I don't advise weights at this point. Your soft tissue probably can't handle it. Google isometrics, Pilates, stretching and start there. Don't think you can't push yourself doing those? I dare you .

And regardless of what your labs say, you are deficient in vits/mins. They don't test for everything - there isn't a test for everything. That's celiac. Your intestines are not absorbing everything (if they were, you wouldn't have these issues). Try a multivitamin. Won't hurt you.

And if the exhaustion/constipation continues you need to see about Hashimotos testing for your thyroid. Just my $0.02.

I found progress happened slowly and became obvious overnight. I'd go weeks or months without feeling different. Then one day, whammo. Big step forward.

Tsh was normal, is there some other test for hashimotos I should ask for?

The constipation went away some days ago luckily. Trying to keep it that way now:) i think it must have been a cold because my mouth/throat seems less dry now, just hoping i wont catch another cold next time i step out of the door! Exhaustion still there though.

[mushroom]

Actually, the TSH doesn't tell you much about your thyroid function. The complete panel is:

Hypersensitive thyroid-stimulating hormone (TSH)
free thyroxine (fT4)
free triiodothyronine (fT3)
reverse T3 (rT3)
anti-thyroglobulin antibodies (anti-TG)
anti-thyroid peroxidase antibodies (anti-TPO)
fT4/fT3
fT3/rT3

Of these, those I have highlighted are the essentials; the others are the frosting on the cake if your doctor balks at running them all.

[funkflex]

Seems that they´ve tested me for this These are the results:

JANUARY:
TSH was 1,4 (0,2-4,0)
T4 was 19,9 (11,0-23,0)
T3 was 5,4 (3,5-6,5)

OCTOBER:
Anti-TPO negative.

[mcbphd1]

There is an autoimmune condition called sjongroen's (I think I spelled that correctly).  It causes dry mouth, eyes, and overall dryness of mucus membranes (joint pain and constipation can occur).  Since so many celiacs have more than one autoimmune condition, this might be part of what's going on.  I think the diagnosis is one of elimination of other disorders.  One of the famous Williams tennis sisters has this, but I don't remember which one.  I'm pretty sure I have both, but convincing my doctor has been difficult.  Treatment is usually just plenty of hydration.

[funkflex]

Update: I am feeling a little better and I am able to do more. I still feel sub par though and work only part time. In addition, constipation happens only rarely now.

 

Blood test in March:

 

IGA TTG = 12 (<7) - decreased from 15 in January

IGG = 7 (<7) - decreased from 11 in January

[alesusy]

Patience is, unfortunately, the key word.

Personally after a lot of trial and error I'm just keeping to basic food. I'm gluten-free since the beginning of December 2012 and I' also lactose-intolerant. I have almost eliminated coffee and tea. I'm eating much less than I used to and basically keep to some vegetables, lots of fruit, chicken, some red meat, some fish, rice, homemade gluten-free bread and muffins, gluten-free ham.

Drinking lots of water helps a lot.

[VeggieGal]

hiya funkflex, well I've been having flaxseed for the past couple of weeks and my tummy has felt relatively calm so i'm presuming thats the reason. Apart from Omega 3, 6 and b vits, it also contains magnesium which apparentely is good for constipation http://lowcarbdiets..../a/flaxinfo.htm . (i actually have half the recommended amount of flaxseed and can tell a difference)
glad youre feeling better anyhow

[funkflex]

alesusy: I too eat homemade food, but as you say, it is a trial of patience. Have you felt any improvement? 

 

VeggieGal: I'll look into flax seeds. Constipation is mostly not a problem at the moment, the fatigue is what bothers me the most right now..

[Cattknap]

I was diagnosed 2 years ago next month....I have suffered from constipation most of my adult life.  I have taken expensive digestive enzymes, different pro-biotics, fiber - tried so many things - nothing helped.   I was spending $100 a month on a natural probiotic and fiber capsules from my nearby apothocary store....with very mixed results.  I started taking Align probiotic - I saw an ad for it and bought it at Costco.   I had read that Align is the #1 gastroenterologist recommended probiotic for 4 years in a row.  I didn't know if it was hype or what but it is $45 for 3 months and I gave it a try.  I started taking Align 4 weeks ago and for the first time in many years I am not constipated and can absolutely count on normal bowel activity - it has changed my life.  Perhaps it might work for you too.  For $45 it is worth a try.