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

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Gluten Free Since Sept...but ... Still Sufferring
0

9 posts in this topic

Hi! I am new to this forum. I am looking for advice. My dr completed a Celiac panel (bloodwork)on me back in June. the only test that came back positive (elevated) was my IGg was 13.5.

I went gluten free by Sept. 01 of 2012. for the first four weeks, I also went dairy free; at the time, dairy did not appear to be an issue so I have been back on regular amounts of it (maybe more than usual with the holidays and all...) but still very cautious for wheat/gluten. I was tested by endoscopy for celiac, thankfully, at this time,the test was negative.

Here`s the thing.. .. I feel right back where I was 6 months ago. Bloated, fat (feeling, i have gained about 10 lbs in the last month!) lethargic (again, too bloated feeling to workout, go to gym). My main symptoms are constipation, bloating, irritability, lack of energy (I am also borderline anaemic), and muscle/joint pain, sleep disturbances, increased anxiety, brain fog.

I strongly suspect there is more at play here. Could I also be dairy intolerant? corn? xanthan gum/guar gum intolerant?

I am waiting for an appt with the allergist (Feb?) and will go to a homeopath as soon as I can afford it (April,most likely); but in the meantime, where should I start??

I will mention, as well, I eliminated coffee for 5 mths (per dr order), but as I felt no different without it, have taken up the cup again, though, I found I felt ok with it black, but since resorting to the old regular (one milk or cream, one sugar) I feel terrible again.

I have determined that sugar (refined) is a bad idea, and I must avoid it whenever possible; but please, help me. I trust there are many who have travelled this road before me who can relate and guide me... I just want to feel like `myself`again.

Energetic, motivated, etc.

Where would you begin? what would you do first, tomorrow, to begin to feel better or find a cause for this misery?

Thankyou in advance to all who read this, and especially, to any who post.

0

Share this post


Link to post
Share on other sites


Ads by Google:

Honestly, i'd strip everything from your diet, and eat only a few 'safe' foods and then slowly add back. Also keeping a food diary helps.

1

Share this post


Link to post
Share on other sites

HI and welcome! Shadowicewolf has good advice there.

I would add patience to the recipe. If gluten is your problem, wise people here have counseled that healing takes time.

I've been gluten-free since July and am only now beginning to feel anything close to better. Maybe I was just too lazy to go through all the elimination diet stuff (I did keep a food diary tho), so I just kept eating everything except gluten and dairy because it seemed like no matter what else I ate, I was going to feel sick anyway.

For me, it has been a matter of hanging in there, because after all, our intestines are still trying to heal. Turns out none of the foods I was worrying about (corn, rice, soy) actually bother me.

Things are improving... slowly.

This is just my experience. Others have found that they do indeed have intolerance or allergies to other foods, so Shadow's advice still stands if you want to check that out.

0

Share this post


Link to post
Share on other sites

I sort of did that... not a FULL elimination, but quite restricted but i suspect not long enough. i was keeping a good food journal for the first few months,but again.. holidays right... life is pretty busy with four kids! I am just about frustrated enough to start over. The fact that I have been awake since 2 30 am is reason enough.

I have read so many `elimination diet plans`, and find the advice varies so much it is hard to know where to begin, for how long etc... can you suggest one that has proven helpful?

0

Share this post


Link to post
Share on other sites

Maybe try a Paleo diet for a while? It removes grains, some dairy, refined sugars. There are tons of recipes online and you may be able to get books at the library?

Please remember that healing is a slow process. You will have up and down days.

Keep a food log and note any symptoms.

Once you have done more healing you can add foods back in, one at a time.

1

Share this post


Link to post
Share on other sites




Any chance you are getting cross contamination? Old toaster, shared baking sheet, common condiments (like butter). For me, those were all things I hadn't given consideration too when I first went gluten-free and it didn't seem like it bothered me. The longer I was gluten-free, the more sensitive I became. I have my own condiments now, my own toaster, and I line bakeware with foil.

0

Share this post


Link to post
Share on other sites

Dont remove a lot of foods and starve yourself. I made this mistake and it further damaged my health and led to adrenal fatigue and hypothyroidism. Eat plenty of carbs/sugars, healthy fats and proteins. Eliminate foods slowly and cautiously, I would start with caseine (milk protein) and see if that helps. The reason I say this is if you starve yourself your metabolism will crash and you will get more food sensitivities such as I had

1

Share this post


Link to post
Share on other sites

That is what happened to me. In my case, I traced it to corn intolerance also. I found going gluten-free was easy, this is the best day/time in the world to do that, as more companies are careful to label things gluten-free. Its not the same with corn, there are many derivitves of it, hiding under other names, and it is used in/on nearly everything. Going on a clean unprocessed diet is not much help, because, for instance, fresh produce is sprayed with corn, meat processors use corn based cleaners.

Good luck finding your answer. You might want to look at corn next. Celiac and corn intolerance seem to go hand in hand.

0

Share this post


Link to post
Share on other sites

Any chance you are getting cross contamination? Old toaster, shared baking sheet, common condiments (like butter). For me, those were all things I hadn't given consideration too when I first went gluten-free and it didn't seem like it bothered me. The longer I was gluten-free, the more sensitive I became. I have my own condiments now, my own toaster, and I line bakeware with foil.

Actually, thes past couple weeks that has crossed my mind. I realy would like to get to a point of a wheat freeégluten free home...

I think that could very well be part of the problem. I have my own butter dish (well, my daughter and i share but she`s gluten free now too) I don`t use a lot of those things anymore anyway,but I was thinking that when i open a new jar i will separate a potion for our use only. My kids aren`t careful, hubby isn`t very careful. We use the same cutting board, dh likes to use the toaster for me for breads, where I (when I ocassionally eat bread that is) prefer to use the sandwhich press which can at least be cleaned. Maybe its time I go shopping and get some gluten free only items??

I have started to feel better this week, my energy is slowly climbing. I have determined chocolate, refined sugar, any carbonated drink; all are very bad for me.

I have been drinking mostly water and black coffee. Eating grapefruit, salads (with homemade oil, vinegar based dressings), chicken, beef, veggies. For carbs I have had sweet potato, carrots, some quinoa(also a protein I know), small amounts of oats, and just yesterday brown rice. I feel the bloating is subsiding, but overall water retension still higher than I would like. Due again to bloating and gas, I have avoided legumes, but find green beans troublesome and last night`s cabbage rolls were not such a great idea ;)

Also, I have reintroduced exercise to my daily routine, and some supplements (ACV, Flax oil, Iron and Vit D).

Thankyou all for you help thus far, there is so much to learn and think about; without being able to talk to others who have been through this, I don`t know where I would be!

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
      103,593
    • Total Posts
      918,293
  • Topics

  • Posts

    • celiac disease is psychosomatic
      The following link might be helpful for others experiencing simlar psychosomatic issues with doctors. Although it's only for psychiatrists, I think it should be for all doctors! http://www.psychsearch.net/complaints/ The neuropsychiatrist I saw might fall into this category? I can checkmark:

       Falsified medical records
       No Biological Test for "Mental Illness" (no blood, urine or other lab testing)
       No Informed Consent (if she sends my medical records to my doctors)
       Physical Illness Misdiagnosed as "Mental Illness"
       I was told I have a "chemical imbalance" (without any lab tests)
       Unethical Conduct
       Unprofessional conduct
       Something else that didn't seem quite right  
    • Allergy or Preference? Waiter asks
      At my local Five Guys, I told the counter guy that I had to avoid gluten for medical reasons. I was ordering a burger with no bun and some fries. He yelled back "Allergy Alert!" and every line cook immediately changed gloves and cleaned their work space. Will I go back? You bet I will!
    • celiac disease is psychosomatic
      The office is located in another city than where I go. There is no receptionist at the location closest to me meaning patients wait for the doctor to open her closed door to call their names for a consult. So, I would have to knock on her door which would really make her say that I'm sick since I keep writing letters AND showing up in person. The main office is too far for me to travel with road construction going on for the remainder of the year. I suppose I could mail the letter instead. But the staff is very irresponsible so it might be thrown away. The doctor probably told them that nothing needed correction in my records so ignore further requests from me. The other staff member I dealt with seemed normal, but I complained to the doctor about the staff member I dealt with today when she failed to update my phone number that I gave to her a few times (and which she said she updated), which resulted in me showing up for an appointment (I traveled a distance) one of the testers thought she canceled by leaving voicemail for phone number I no longer had. What I mean is I told the doctor that the staff member said she updated my phone number when the doctor asked me why I was there when I showed up for that cancelled appointment. Unfortunately, this staff member answers the phone most of the time. I'm sure she did what she could to make me look bad to the doctor to make her look good because I complained about her. I feel like scheduling an appointment with a psychologist to tell her what happened with this name calling. I'm sure it's against therapist code or I'd like a psychologist's feedback on this doctor's behavior. There are other patient complaints about her on the Internet how she laughs at patient's pain and suffering. I feel that's how she treated me. Update: The staff member called me back to tell me the doctor amended my report and she put it in the mail. I wonder if the doctor discussed what she said to me with another doctor who told her what she did was unacceptable in the medical field. I am hoping my report is amended or new negative comments are not added by the doctor to say I keep writing her letters or something in that regard.
    • celiac disease is psychosomatic
      The letter I am suggesting has nothing to do with the doctor.  I would type it and walk it to the desk when are in the building for your other appointment. 
    • celiac disease is psychosomatic
      Thanks. I'm not sure if the doctor will read another email I send and that's the way I'm told by staff to contact her. It will just confirm that I keep writing her letters although I only sent her one email about it! I already told the staff and her that I didn't want my medical records sent to any doctor's office, but I don't know if they will do it out of spite. It was scary talking to this doctor because she wouldn't listen or let me get a word in...I guess that's the reason why I feel the need to raise my voice at this office. When I requested a Lyme disease prescription from another doctor years ago before I knew I had celiac disease, this ignorant doctor told me not to come back to his office because there's no such thing as Lyme disease so only crazy people think they have it. I thought that was the worst experience I had with a doctor, but this experience was worse. I mean this neuropsychiatrist kept calling me a sick person over and over. It's so scary dealing with doctors like this. I really don't know how many other doctors may have wrote in my records that my symptoms are all in my head because celiac disease isn't real.   And my neurologist said this neuropsychiatrist was great. Maybe he says that about all the doctors he refers to patients to? I don't know if you call her personality psychopath since she appeared really nice during my consult, but she was thinking all this negative s*** in her mind at the time or different than she appeared to be.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • celiac sharon  »  cyclinglady

      Hello cycling lady, have you noticed my picture is showing up as you?  Have no idea why but it's rather disconcerting to see my picture and your words 😉  Do you know how to fix it?  You seem to have far more experience with this board than I do
      · 1 reply
    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,692
    • Most Online
      1,763

    Newest Member
    Robotman2009
    Joined