Sheesh, Why Am I Still Having Problems?

[HappyCat22]

I've been gluten-free for about 3 months now, and I'm still not feeling much better! I feel like my energy level is at 0 most the time! I'm still having stomach problems, menstrual problems, sleeping problems, etc. Could there possibly be something I'm missing that's still getting to me?

[Canadian Karen]

Have you checked EVERYTHING???? I thought I did, but after some serious sleuthing, I discovered several things that were still contaminating me....

1) I was using the family toaster, not my own, therefore wheat crumbs were

getting onto my gluten-free bread....

2) I was drinking Clamato Juice (I loved Bloody Caesars, a Canadian drink), and

I found out Clamato Juice contained gluten.

3) I was eating Gax-X like candy for the gas and bloating - after investigating,

I found out Gax-X has gluten in it!

4) The soy and terriyaki sauce I was using was not gluten free....

5) The hand cream I was using was not gluten free.....

6) After a serious reaction to the Lomotil that my GI dr prescribed for my

diarrhea, I found out this also contained gluten!!! (Don't trust that you GI

will know what is gluten-free and what is not....)

Have you checked all your medications? All your vitamins? All your supplements?

There are so many ways it can still slip into our systems......

Hope you find it!

Karen

[celiac3270]

You might be doing something wrong like Karen suggested..........or you might be doing absolutely everything right. I have called every company for everything and I'm still having problems after over six months. I know that toothpastes are gluten-free, I don't use lotions, I called about Prilosec, I'm doing everything right. I have no other food allergies, doubt any intolerances. There's a possibility that you're doing nothing wrong at all, but you have some other problem in your body that the diet won't correct or it's just gonna take you five months or seven months for whatever reason. Make sure you're doing everything properly and then it's up to the doc. to figure out what's wrong with you.

-celiac3270

[HappyCat22]

I am taking vitamins that I haven't checked, but every other single thing I've checked and am doing right! I even wash my hands after feeding my pets because their food contains gluten. Thanks for your replies!

[celiac3270]

Just stick with it, HappyCat, I'm doing the same thing and I've still got problems and Stacie (jhmom) has had symptoms over a year, I think. When I started, I thought it would be a quick three months, but apparently not. You just need to work with your doctor, run lots of tests, make sure you're doing everything right, experiment with cutting out certain things, and be patient. Good luck.

[HappyCat22]

Thank you, celiac3270! I'm going to go check my vitamins right now, too.

[Guest gillian502]

For those of you still having problems after having been gluten-free for a long time, I'm wondering, are your antibodies still raised also? I've been gluten-free for a whole year now, and not only am I still having abnormal bowel movements and stomach pains, but the antibodies are still there as of a couple months ago. Like you, I'm checking every product, doing everything right, and have no allergies, as well as eating almost no dairy. I don't know what's left to do. I also have colitis, but it is not a severe case and my dr. doubts that is the culprit. I'm curious if I'm the only one who can't seem to get a grip on all this and heal already!

[Canadian Karen]

When I went to the dr. this week, I found out my antibodies are still sky high (over 100) despite being gluten-free for 1 1/2 years (with some inadvertent slips....) They are going to be doing a colonoscopy of find out if it is collagenous colitis..... that's what he suspects it is..... he said my thyroid could also be throwing things out of whack...

Karen

[Guest gillian502]

Wow, sorry to hear that, Karen. Don't sweat the colonoscopy, it was a breeze. My dr. said I have an unspecified type of colitis, but it is most likely Lymphocytic Colitis (aka Microscopic Colitis) but that doesn't explain why I also still have high antibodies. Like you I have had some very minor slip-ups with the diet but the antibodies should be gone by now. It's such a struggle.

[Canadian Karen]

Thanks, I sure am not looking forward to it!!!! I hope they give me that medication everyone is talking about that makes you forget the whole thing!!!

I just want them to find the reason why my antibodies aren't going down either. I am just praying every night that they don't say to me that it is refractory..... that's not good.......

I think I would just jump up and down for joy if I ever had a normal bowel movement..... I haven't had anything but diarrhea for years now....

The funny thing is, although I have a difficult time of it, I can maintain my weight.. And even during my pregnancies (I have four children, 10 yr daughter, 5 yr old daughter, and 3 yr twin boys), I had no problems gaining weight for the pregnancies..... and I wasn't on the gluten-free diet for the pregnancies either.... The professor I went to see at St. Mike's who specializes in Celiac, said that God is kind to pregnant celiacs!!!!!

Karen

[Guest gillian502]

LOL...you sound just like me. I would also be overjoyed if I ever had a normal bowel movement! I've had nothing but abnormal, soft stool for years now, too, and the diet hasn't changed that. Did your dr. say if having colitis would explain the reason why the antibodies aren't coming down? I was thinking colitis and the celiac antibodies are 2 unrelated events, but I guess one could explain the other, I'm not sure. I was also very worried about refractory sprue, and still am, although I'm told it is very rare and unlikely. I feel like there must be something with gluten that I am eating and don't realize it, and that's the reason for the antibodies. But I have been so diligent with this diet, despite not seeing much improvement (with the exception of gaining my weight back.) Hopefully we'll both have an answer to these continuing problems in the near future.

[Canadian Karen]

Hi Gillian502:

Sounds like you and I are in the same boat!!

The dr. did mention that collagenous colitis (which is the same thing as microscopic colitis), could be the cause of the constant diarrhea. If the biopsies taken show the collagenous colitis, he said the first treatment would be very high doses of bismuth (8 tablets a day for 8 weeks) and sometimes that clears up the colitis. He said if that doesn't work, then the next step would be to consider prednisone. I hope it doesn't get that far.... I just found out today that my colonoscopy is on Sept 28/04...... so another month to wait.... Oh well, I have had diarrhea for so many years, another month won't matter much....

I have tried absolutely EVERYTHING to "bind" myself... NOTHING WORKS!! Not Immodium, calcium (without magnesium), psyllium seed husk, Pro Diem, Iron, Codeine, etc. etc. etc........ I can take psyllium seed husk by the cupful and still have nothing but water for a bm the next day.....

I have a very positive feeling about this dr. though..... he spent over an hour with me discussing possibilites, complications, treatments, etc. etc. He was extremely knowledgeable about celiac (he is the professor dr. all the other GI's use for consultation)..... he really knows his stuff, he specialized specifically in celiac and I have faith that he will find out why my body won't respond to the gluten-free diet....

Just out of curiosity, how old are you? Do you remember when you first had your celiac symptoms? I had anemia since I was a child, but not really any other gastric symptoms until my early 20's when I went to Jamaica for vacation and got food poisoning.... from that point on, it has been nothing but hell - I guess that is my "event" that triggered the celiac..... I am now 41 years old....

Karen

[celiacfreeman]

natural flavor equal rye in most juice, for sure the Ocean spray ruby red grapefuit juice, don't forget stamp and envelopes

[YankeeDB]

Other food intolerances can make one tired. I do best if I avoid milk/dairy, yeast (including vinegar, sigh), eggs, and soy. The York labs test confirmed this and also showed I react to pears, sunflower seeds, and cashews which are not things I usually eat so I never noticed.

[lovegrov]

A frequent cause of continued problems is bacterial overgrowth. I know some on this thread are aware of this and have tried it, but for those who haven't, get a probiotic like Culturelle and take it. It might be that simple.

richard

[strack2004]

Hi! I am relatively new to celiac discussions here. I have not been diagnosed with celiac but have had digestive problems for at least 70 of my 76 years. I decided to go with the SCD diet outlined on htt colon slash slash www.breakingthrough the vicious cycle.info slash. I had to spell out the words for the punctuation there as \i am using a Spanish typewriter at the library and don't know the location of punctuation marks. This is quite a tough diet to follow. I've only been on it for about a month , almost 5 weeks, actually. I did eat some non gluten-free foods last week when I had company/. Am back on track this week, but suffereing the ill effects from last week which makes me think I may be on the right track. Although I did eat some foods that are gluten-free but foods I never did tolerate well like corn and tomatoes. Won't do that again. \I decided that I don't have so much time to get over this and feel well as you younger ones probably do. I just received an email from one of my daughters. It is addressed to people who have Crohn's Disease. \It seems to me that I have read that people with Celiac are more prone to Crohn's. At any rate, my daughter sent a post from a site called Health_and_Healing@yahoogroups.com. This is from a haroldzylber and concerns alternative treatments, especially enzymes , probiotics, etc. There is quite alot of interesting informations here, I thought. Looks like the full site identification is http colon slash slashgroups.yahoo.com.slashHealth_and_Healingslash. I haven't tried to get to it, so just hope I put it down right. Cheers, Ruth

[Judithg]

I've had a lot of problems related to bacterial overgrowth. In fact, I went on a regimen of antibiotics (Cipro) and probiotics for a week, followed by daily use of probiotics. This seems to have helped a lot. At the very least, take the probiotics--can't hurt.

[Mark]

Gillian502,

I've been gluten-free for one year as you, and my antibodies are still raised. They are going up and down, sometimes negative, then positive again. I am sure I have had no mistakes, so I cannot really explain it.

Also, my doc has been checking my blood for other food, and besides gluten & casein, a soy intolerance appeared six months ago, and I shoved some eggs antibodies recently.

But these tests are kind of special ones, I still have absolutely no allergy, when checked by standard allergy tests.

I just think about other possibilities: They harvested a wheat field a mile away from here, I wonder how far the dust can go? And also, does grass pollen contain gluten? I mean, grass is close relative to wheat - well, nobody eats grass, but one swallows a big part of what he/she breathes in.

I am really concerned about the bacterial overgrowth too. I'm taking probiotics and it helps me somehow. Interestingly, I had to go on antibiotics last year, and my symptoms almost disappeared during that course. I wonder: has anyone of you had the same experience with antibiotics?

MARK

gluten-free/CF since September 03

[tarnalberry]

mark, has your doctor said anything about the fact your symptoms disappeared on antibiotics? that seems strongly suggestive of a bacterial overgrowth, and is definitely worth further addressing.

[Mark]

It convinced her to run a series of tests for helicobacter infection, which finally turned out negative. But I have no idea what these tests can tell about other bugs. So I agree with you, and I'll keep nagging

MARK

gluten-free/CF since September 03

[brehm48]

I can relate! I have been wheat free for about two years and Gluten free for about one. When I first stopped eating wheat I felt a lot better, but after a while my symptoms relapsed. I started reading about Celiac's and became Gluten free. Initially my results were really good but after a while same thing Chronic Exhaustion. I then did the dietary challenge for corn, which I found that I could not eat either. I also noticed that if I consume a lot of dairy, I have problems. My reactions to corn is much different than to Gluten. When I eat corn I immediately feel tired and itchy. When I eat Gluten I usually get a stomach ache or no symptoms at all until the next day, when I am constipated. I have to eat psyhlum Husks everyday to maintain regularity. Maintaining regularity is very important because that is how we remove all the toxins from our bodies. I feel like it is a process and everyday you have to educate yourself a little more. Some days I wake up tired and other days I feel fine. I am currently under going testing for Celiac's. But I don't put my hopes too high in a diagnosis because whether the doctor says I have Celiac's or not, it won't change the symptoms that I experience when I consume certain foods, although it would be nice to know. The other thing is I don't think that I could eat gluten just to make a test come out positive. My body couldn't take it. I recently started seeing an allergist that is very understanding, but I don't know how knowledgeable he really is about Celiac

[GEF]

Hello Rebecca and welcome to the forum!

I was just mentioning to my fiance last night that I'd be soooo healthy if it weren't for this intolerance issue. I'm 28 and know what it's like to be so young and feel soooo tired... it's just not normal for people our age to have no energy. I'm in the midst of a massive report here at work and it's a challenge keeping a focus on it... I'd go home and take a nap if I knew it would work! I wonder what works for fatigue... does the anti-depressant help you with that?

I'm considering doing a full panel intolerance test through York, just to see what other intolerances I might have.

Do you think that your relapse of symptoms could be due to a hidden ingestion? Are you certain that none of your meds have gluten?

Anyhow, I'm glad to meet you and I believe you'll enjoy it here.

Gretchen

[brehm48]

Hi Gretchen, is nice to talk to someone who understands. About My meds I also take Alegra 180mg. I contacted both maufacturers and they both stated that their products are not made with any gluten, but that they are not tested to be gluten free, and that their supplier could change at anytime. I have only been on the Doxepin for about a month and the Alegra for about two months. I am very careful about cross contamination and reading food lables, it's quite an art. It's amazing the names that gluten can fall under: Such as natural flavorings, maltodextrin, vegetable protein. But it is very hard not ever get any. I think that I may have other food sensitivities but it is a very long process and the doctors seem to know less than we do. Also the city I live in is not that big, the closest place to go for real testing would probably be the Mayo Clinic in Arizona. That would be very time consuming and costly so it's kind of a last resort. But I try to stay postive, I'm glad that I don't have cancer or something like that, some people our age and younger do. Also my sister in law also has a lot of food sensitivties so we get together and cook a lot. Thanks for listening and nice to meet you.

Rebecca

[tarnalberry]

Gretchen, despite doing the elimination diet, I'm considering going the York labs route as well. I'm a little concerned that IgG testing still hasn't been scientifically validated, not to mention the $350 price tag... Let us know if you go through with it!

[Mary]

Hi folks, I am really new to this problem and haven't even gotten a firm dignosis am currently waiting for blood test to return. I have had a lot of improvement since I have gotten off all gluten At least I think I have. I had a small break through this morning that was loose but it has been pretty good other than that. I just keep catching myself making mistakes. I read lables but forget all the thing that I should be looking for. I have to eat out a lot and that is a problem at times. Anyone know of a good list of foods to avoid that have hidden gluten in it?