Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Sheesh, Why Am I Still Having Problems?
0

41 posts in this topic

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?

0

Share this post


Link to post
Share on other sites


Ads by Google:

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

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites




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

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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 :rolleyes:

MARK

gluten-free/CF since September 03

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

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 :rolleyes: 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?

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,365
    • Total Posts
      920,553
  • Topics

  • Posts

    • Just a quick one to say I got a diagnosis of celiac disease today. I know in the past it's been helpful for me to know the outcome for other folk, so thought I would update. The moral of this story is even with a VERY borderline blood test it's worth persisting. thanks for all the help Sue 
    • Well, I am stressed to the max. I just spent 3 days in the hospital with D and stomach pain, dizziness, chest pain, generally unwell. Then another trip to the ER on top of that. My protein was low and my RBC and hemoglobin dropped below normal in 3 days. Not terribly low, but below normal. I also had metabolic acidosis which still confuses me. I usually eat every 2-3 hours despite it causing pain to keep my energy up and was unable to eat that frequently in the hospital. I usually carry protein with me and had been taking liquid iron which I stopped a few weeks ago because my new endo is not a fan of iron supplements. As soon as I got home from the hospital I started with my protein drinks and blackstrap molasses for iron.  I now have bilateral mild pleural effusions and a nodule on my left lung, which hopefully is nothing, but was not there on a CT back in March. In addition, my left adrenal gland, which also appeared normal in March, is calcified and the report indicates this is most likely due to a previous bleed or infection. My colon appears tortuous (whatever that means) and we are waiting on colon/endo biopsies. I have been gluten-free since March except for cc so expect the biopsies to again be negative.  My primary care is useless. I am in the process of getting a new one I will see on the 7th but need the current one to fill out FMLA paperwork because I both physically and mentally need time to recover. I will have to go off of payroll for 2 weeks but I think I need to. I called the primary's office today to discuss the hospital tests which she does NOT have yet and to ask if we should/could start a low dose of prednisone because my body is attacking itself. My thyroid on ultrasound is also abnormal though my bloodwork thus far is normal. But it hurts on that side. The only reason the ultrasound was ordered is because I asked for it in the first place. The only reason I have started seeing an endocrinologist is because I found one myself. Anyway...I broke down in tears on the phone eith her today and she told me I was having a "manic episode". I have no history of mania. I only recently started taking xanax to help me cope with the stress of being sick. I was not sick until I did this stupid gluten challenge over the winter. My mother was in town and spoke with the doctor on the phone as well who was trying to get my mom to take me to a psych hospital. She also threatened to send the police to check on me. My mother assured her I was in no danger and we hung up the phone in complete shock. Admittedly, I was in tears when I called her and probably sounded like a fucking mess. But I believe I referenced the dropping iron, protein, fluid near lungs, enlarged thyroid and attacked adrenal gland then literally said "my body is attacking itself and I need help" to which she said, "I think you are manic". Lovely. If I was a mess before that phone call it was 10x worse when we hung up.  Anyway, this is the first night it has been extremely difficult to sleep. I admit my thoughts about my odd symptoms keep me up often recently. I mean, who the hell bleeds from or gets an infected adrenal gland?! I am sure it was another time I begged my primary for help. On a side not, the NP at the ER told me the primary should be putting these pieces together and communicating with my other doctors better. He then stated that he used to go to the same practice but left because the practice got too big and like a business. So I got some validation from that chat.  A melatonin or a .25 xanax usually does the trick for me to sleep but I am so disturbed about my interaction today, stressed at my health, stressed that my ex has our son so much because I am always sick (bless him for coming through), stressed that I have to go back to this awful doctor because I will need the FMLA paperwork before I see the new doc on the 7th.  8 months ago, I took a multivitamin when I remembered it and that was it.  End rant. Maybe now that it is off my chest I can finally sleep. 
    • Hi DKH0614, I use aspirin, Pepto Bismol, and peppermint tea or Altoids peppermints.  Pepto Bismol has a soothing effect on the gut.  Pepto Bismol also has aspirin in it.  Peppermint is helpful for relaxing smooth muscle tissue and getting gas out of the stomach. As per KarenG, you may be reacting to dairy.  Dairy has a sugar called lactose in it that some people with celiac have a hard time digesting.  You could try avoiding dairy for a few weeks to see if that helps.  Or try taking lactaid type pills when you eat dairy. It doesn't take very much gluten to cause an immune system reaction.  So it is important to avoid even traces of gluten if possible.  The stuff is hard to avoid sometimes if people around you don't understand how much a small amount of it can affect your body. Let us know if we can help with any  more questions, or if you have concerns we haven't addressed. And welcome to the forum! Also, if you subscribe to the thread (notify me of replies) you'll get an email when people respond to your thread.    
    • After a year and half, if you are eating gluten-free, you shouldn't be having pain from Celiac.  Perhaps you need to find out what is really causing your issues?  Dairy/ lactose is an obvious first place to look.
    • Hi! I am 15 and have been diagnosed with celiac disease for about a year and a half now and I am woundering what do some of y'all use to relive some of the abdominal pains that come along with celiac/gluten allergies?  ( Ibuprofen,  Tylenol, etc.) 
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,439
    • Most Online
      1,763

    Newest Member
    DKH0614
    Joined