Still having a few symptoms after GF for almost 3 months...

[suump]

Hi, it's me again ^^ I have good news. I no longer have the rash, i don't get diarrhea or constipation anymore and my stomach hurts less now ...However, I still feel quite bloated on occasions and my stomach rumbles sometimes still...I get a few sharp pains on rare occasions too...I also have had a few canker sores here and there too...It's confusing. Is there an explaination as to why I still get some symptoms after going Gf?

[Fidissimus]

Sorry to hear you're not quite 100% but give it time. It can take up to a full year to fully recover. It can also take a long time to get a handle on all the ways gluten can sneak into your diet. You maybe still getting some from hidden sources or cross contamination... double check everything you eat and maybe don't eat out for a while.

Have you gone back in for follow up blood work to see how well you're sticking to the diet?
_________________
Cheers!
Jenn

GF BD: Feb. 2001
Free of wheat, barley, rye, oats, dairy, eggs, almonds, pineapple and brewers yeast.
http://graindamaged.blogspot.com/

[aklap]

Hey Suump,

Glad to hear you are seeing improvement. I agree with what Jenn said. Give your self a bit more time, I think you'll find things will start settling down.

Followup blood work is often done at 6 months, sometimes it's done at 3 months - just depends on the doc.
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[suump]

what's also been bothering me is that I had a canker sore that lasted about a week an a half. The pain is gone but it seems the scarring wont go away. It's like a small, painless white patch that wont go away after the canker sore healed. It freaks me out because I hear that people with CD can get cancer and stuff. I'm only 20 and I don't feel like going through cancer at this young of age over some gluten. I'm thinking of getting it checked and im hoping it isn't oral cancer or anything like that. I don't drink, smoke or chew tobacco, never have

[aklap]

It probably wouldn't hurt to get it checked out. I'd try not to worry too much about it tho I haven't see too much relating Oral cancer and CD - it's primarily intestinal cancer that can come from not followng the diet.

I forgot to add in the 1st post...

Keep up the good work and thanks for the update!
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[suump]

I just read something on the internet about Celiac disease and dairy products...I love dairy products. It said something about reintroducing dairy in to your diet once the intestine heals up. Maybe I need to do that? Could that be a reason why I don't feel 100% back to normal?'

If I continue eatting dairy, will it mess up my intestines too?

[aklap]

Hi Suump,

Generally what happens is: gluten damages the villi. The villi produce lactase [an enzyme]. That enzyme breaks down lactose [sugar component of dairy. Since the villi are toast, there's no lactase. Viola' Lactose Intolerance!

Once the villi regrow and repair, lactase production returns. Often times Celiacs can then re-introduce dairy into their diets.

Beyond lactose there's casein [the protein component of dairy]. People can have issues will casein, just like they have issues with other proteins [gluten].

Can dairy cause villi damage? Yes it's possible. There are several foods that can do that. [I have a link, but I have to find it].

You might try removing dairy for a bit and she how you feel...or maybe some other foods. Often times there are multiple food issues at play. Once the biggest offender has been removed [gluten], others start to show.

Maybe a food diary is in order?
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[suump]

ok. I'll try removing dairy for a bit. What really stinks though is I just went grocery shopping today and bought some ingrediants for my gluten free pizza thingy, some yogurt, and some more cheese xD I'm a bit disappointed I absolutely love cheese. I'm tight on money as of lately, most of the food I buy doesn't contain cheese but a few things do. I would be unable to eat something even with a little cheese in it?

[aklap]

You'll have to experiment and see how it goes.
_________________
Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

[Noatak]

suump....do not worry at all about the white patchy area you have after a canker sore. There is a medical term for it, which I cannot remember, but what I would advise you to check into is whether or not you have Sjogren's Syndrome. This is another common autoimmune disease that people with CD are prone to. The test is a blood draw, very easy, and I believe it is called the SS1 abd SS2 test.

Sjogren's, which I have myself, causes dry mouth and dry eye. It can become more obvious as you age because your eyes get drier anyway with age. I had canker sores many times before I was diagnosed with CD and once I went GF, they all went away for good. However, I have a white patchy area, still, on the inside of my cheek. It is not painful in any way. It is not cancer and most likely, will never be cancer. Dentists may or may not be familiar with this but many know nothing about CD anyway.

I see an opthamologist for my dry eye problem and he is very knowledgable about CD and Sjogren's. He told me that CD can cause many problems in people but they are usually manageable so not to worry so much about them becoming cancer. Your mouth may be dry from Sjogren's and tissue may take on a white appearance from lack of saliva. With oral cancer, a lesion will look like a sore and be reddened, not white. It's just another one of those weird things that happen to people with autoimmune problems.

Relax and stick to your GF diet for optimum good health. Have the blood test done and if it's Sjogren's, there are products to help bring moisture to your mouth tissue and drops for eye dryness that work wonders! Good luck!

[GFPolarBear]

When I saw my GI for my first post-endoscopy follow-up, he said he wasn't shocked I was still occasionally having gas/looseness (sorry). He said that it can take some time for the damage to heal, and that symptoms can continue during that process, although they usually do (and did in my case) get better.

Hang in there!

[suump]

thanks you guys I'm so glad i'm not the only one still dealing with some problems even after going GF. I've definately heard of Sjogren's Syndrome before too...I don't have any medical insurance, mine ran out after I turned 19 which was a year ago. So it's gonna be a few months before I can even see a doctor again, since I had to pay for the last two visits. But when I do, i'll ask about that. Yea, the white patch is totally painless. It's just there. My mouth did start to feel a little more dry than usual too.

I'm trying really hard to make this diet work. I've had a few slip ups here and there during the 3 months. (Cross-contamination 2 times and buying the wrong box of taquitos). I want to live as long as I can, and i'm worried that if this thing doesn't heal up soon, that i'll face even more problems. And now that I think of it, maybe I shouldn't eat so much dairy for a while, that may be why i'm experiancing gas and bloating still (without diarrhea and constipation, yay!) But it is still annoying.

[Noatak]

Make sure you drink lots and lots of water as this will help with any dryness and always helps to flush out your system. As an added note....I can eat dairy but have to watch how much, even after 2 years GF. I can have a samll amount every day but if I eat more than a glass of milk's worth, I have stomach problems. It does take time and require patience on your part but you are young so healing will happen. This diet can be challenging but over time, knowing where gluten is hidden will become second nature. I pretty much stick to naturally gluten free foods and the only packaged or processed food I eat comes from Whole Foods products that are clearly marked GF or from companies that specialize in GF only.
I use none of the mainstream food industries products because I don't have time to be calling them to verify. I had so many symptoms when I was diagnosed and was very sick but now I am symptom free and my bloodwork couldn't be better. You will get there, don't worry!

There is a product called "Biotene" and it is a line of toothpaste and mouthwashes that specialize in dry mouth problems. It has enzymes in it that help with those with less saliva. Not cheap, about $8.00 per large bottle of mouthwash but you might want to give it a shot if your mouth is dry. Also, chew gum and use hard candy as this helps to produce saliva.
I never go anywhere without a stock of both. They also tell you to avoid alcohol with Sjogren's but after giving up things on the diet end, the wine stays!

[suump]

*sigh* i'm hearing that I might have to give up dairy and caesin...As if my diet isn't already restricted...I'm really, really upset. This whole thing has been a giant inconveniance since it all began ;; First, it's gluten. Now it's dairy. I mean, come on. When does this end? There is no way i'm giving up dairy. Absolutely no way.

The diet was working for me for about a month and a half, now i'm in crippling pain. My stomach has been hurting for a few days now. It hurts after I eat. Does this happen to anyone else? I'm about ready to start fasting for a few days or something.

[Noatak]

I know, suump, this is all very overwhelming for you and you are also much younger than many here who went years of feeling badly before they were diagnosed. And I fully expected you to dig in your heels and go into overload.

About 5 years before I figured it all out as far as having CD, I remember reading about Celiac and thinking to myself...."Good grief! No way could I give up my 52 grain bread I love so much!" But then as time went on, I got sicker and sicker and one night passed out in a restaurant. Very embarrassing to be hauled out on a stretcher, in an ambulance, and end up in the ER. Not to mention how horrible I felt. Then it took another 3 years for me to become ill enough, plus 2 added autoimmune diseases to boot, before the CD was diagnosed and a semi new way of eating began for me. I was READY to do it by then though. I tell you this so you can think about your situation and make a decision about your eating habits which will affect you for the rest of your life. You will only have to cut out dairy long enough to figure out if this is the problem for you. If it is, maybe people here could come up with idea's to help you find substitutes
for the things you love, and give your intestines a chance to heal. You may not have to give up dairy forever.....just have smaller doses of it.

I still have cream in my coffee in the morning but as it is rich, I use so very little. Then I may have a skim chai latte in the afternoons, about 2 days a week. I was never a big cereal eater so only have that about once a week. Ice cream is different though....I have to watch the amount, no more than 1/2 cup per serving and can only do that about once or twice a week. As I am not a total ice cream nut, I have it about twice a month and that is easy for me to do. I eat cheese with my salads but have very small portions.....not the usual, giant American size serving as that is when I get into trouble.

I hope after you think about things and take a few days to calm yourself after hearing what might be the cause of your discomfort, that you will give it a try. Just keep remembering that there are many other diseases which would be much worse to have. Celiacs are lucky people because we can control our health through diet alone and not rely on surgery or meds to do it for us. Plus, once you get things under control, you should feel so much better and that is worth it's weight in gold. You would be surprised at what you can live without....I learned that myself and it surprised the hell out of me!

Two things.....try going without dairy, even for a week, to see if this is a problem for you. Second, watch for hidden gluten. I know this seems hard but don't forget it will take awhile for you to learn all this stuff. Until then, try to stick to plainer, healthy foods like fruits, veggies, fish, chicken.
If you need help finding a substitute, ask away and we'll try to help as best we can.

Tropical Source candy bars are sold in Whole Foods Market around me and they are GF/DF and absolutely delicious. Rice crispy, peppermint flake, toasted almond are some of the flavors! Hang in there, lady!