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De-lurking With A Couple ?'s


Morrisun

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Morrisun Newbie

I guess I should give a little background. Was diagnosed with celiac disease May '04 by bloodwork. I've had "stomach problems" my entire life, they've been getting worse the last 10-11 years. Looking back now I've realized that there were clues to my celiac disease waaay back when I was a very young child as my baby teeth came in with no enamel on them at all. :o

Anyway, after my diagnosis I figured that if I didn't go gluten-free that I would just continue to have the usual stomach cramps, "D", etc. We were in the middle of moving from one state to another, my DH was retiring from the military, it was an extremely stressful period of time. I'm not trying to make excuses per say, but I honestly did not realize how seriously I needed to take things and I really regret it now. Since my diagnosis last year I have also been diagnosed with Grave's Disease (Jan '05) and have just recently started treatment for that as it took over 2 months to get in to see an endocrinologist. :(

In the last couple of months I've done extensive reading and it hit me that I really needed to go gluten-free now, can't put it off, etc. And to be quite honest I'm sooo tired of feeling horrible. I know this makes me sound like an idiot but I didn't understand the severity of the issue, I didn't realize that by not going gluten-free it was putting me at risk for a whole host of other issues, cancer etc.

I have now been 100% gluten-free for 3 weeks. I have gotten a new toaster, new pots & pans and I've gotten dual PB, Jelly, Butter, etc so as to avoid CC with my DH who is not a Celiac.

The first week, week and a half of being gluten-free I felt better almost immediately. I had more energy, my stomach wasn't constantly "moving", the "D" had decreased greatly. It was great! Now however for the past week or so I've felt much worse and I can't figure it out. I read labels obsessively, I don't eat anything that I'm not sure about, I'm almost positive that I'm not getting any cross contamination.

I have been keeping a food diary for the last two days (so far) and I'm beginning to think that it might be a problem with Dairy, so today I have avoided all dairy. I'm just wondering how long did it take for most people's symptoms to improve greatly? Was there a big difference right away or was it a gradual improvement over time?

Sorry for the novel....I'll appreciate all input!! :)

Jennifer

Diagnosed Celiac May '04

Diagnosed Grave's Disease Jan '05


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ianm Apprentice

Most will get better over time. It seems that it takes on average 3 months to start feeling better and a good year to be healthy. It took a lifetime for your body to get damaged so it won't heal over night. This lifestyle is not as hard as it first appears. It takes time to learn new habits and break the old ones. Once you get the hang of it you will feel so much better.

Welcome.

KaitiUSA Enthusiast

Yea the problems will go away but it takes time. Mine got alot better after 3 months then i was back to normal a few months after that. Everyone is different with symptoms and healing. Some people have it go away quicker then others. It will be much easier when you get the hang of it...you will find this site very helpful...alot of people on here know more about celiac then 95% of doctors you will find.

I also have graves disease

tarnalberry Community Regular

I want to at least say that it doesn't sound like you were an idiot for not knowing how important it was for you to go gluten-free; you were ignorant of the dangers and you've fixed that by finding out. And let's not forget to say shame on your doctors for not informing you!

mela14 Enthusiast

Dairy could definately be a problem as it is with most celiacs. It's been about 5 months for me and I am still trying to fine tune my diet.

Give it time and make sure you scrutinize everything. gluten-free can ony help you to feel better.

Hang in there!

stef-the-kicking-cuty Enthusiast

Welcome to this message board!

Tiffany, I wouldn't necessarily say, she was ignorant of the dangers. She just reacted like everybody else, who we tell: "Oh, I have celiac disease, I can't eat this" and they look at you, as if you're from mars. Because people can't know. That's because this is so rare, the awareness needs to raise and the doctors should be more informed. I'd say, it's not her fault. How could she know???

But know, you're doing a great job I guess. Did you also check your toothpaste, if it's glutenfree? Your soaps, shampoos, cremes, makeup, bodylotions??? And a lot of celiacs have problems with dairy at first. This is, because dairy is digested on top of the villi. But when they are gone, this isn't possible anymore. So when you're better, you could try dairy again. You might be able to digest it again.

Good luck and if you have a question just ask.

Morrisun Newbie

Thanks guys! I made an appt. with my Dr. for next week. I want to see if he'll do some additional blood work, check my Iron levels and things like that. I have checked my makeup, toothpaste, etc. Now that I've gotten the new pots and pans I'm pretty sure that my chance of contamination is pretty low. When you've had stomach problems for so long it's so hard to tell if you just sick, or if it's the celiac disease or whatever..ugh!! LOL

Jennifer


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stef-the-kicking-cuty Enthusiast
When you've had stomach problems for so long it's so hard to tell if you just sick, or if it's the celiac disease or whatever..ugh!! LOL

This is so right! I wish you good luck and keep us posted!

tarnalberry Community Regular

I just meant ignorant in the "unaware of" sense of the word, not any of the negative connotations that are sometimes used with that word. :-) Ignorance needn't imply fault! :-)

hsd1203 Newbie

For me, the first week was wonderful, and then the next 6 months were kind of up and down, in part regardless of what I was eating (I even moved home and had my gluten-free mom cooking for me). I also had to cut out dairy and soy completely for 6 months, and limit fats and acidy foods as they all bothered me.

It gets better but be patient and read every label every time you eat something :)

Hope you're feeling better soon

H

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    • trents
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
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