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

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
      103,906
    • Total Posts
      919,573
  • Topics

  • Posts

    • Most New Celiac Patients Show Normal Bone Density
      Some doctors recommend that patients with newly diagnosed celiac disease get scanned for bone density. Several researchers recently set out to assess the bone density results in a cohort of patients with celiac disease. View the full article
    • Kidney disease question
      Hi all,   I don't know whether kidney disease is celiac related or not but hopefully someone here can advise.
      I recently had a general blood test as I'd been feeling unwell. I think I've been glutened tbh but I also felt lethargic and out of sorts. I asked for thyroid and other levels to be checked. Frustratingly they didnt run the TTG - something I'm really down about. Anyway, The doctor looked at my test results and told me (via the receptionist) there was nothing to worry about. Given past experiences I requested a paper copy of the results and I found the following under the renal profile section:

      Renal profile 142 (135-145)
      Serum Sodium 4.7 (3.5 5.3)
      Serum potassium 5.5 (2.5 - 7.5)
      Serum urea 93 (62 - 120)
      Serum creatinine 93 (62 - 120)
      GFR 77ml/min/1.73m^2 - STAGE 2: CKD only if other evidence of renal damage

      The doctor is presumably happy with this but I'm a little concerned. Should I ask for a doctors appointment and perhaps a urine test? Is the GFR result on its own not sufficient reason to investigate further? 
      Many thanks for any advice you can offer

      Matt 
    • Test Results
      Thank you, guys. I will let you know how it goes sometime after 8 a.m. on Tuesday morning. 
    • New to this gluten-free life
      This site has a lot of good info.  And you can get a free " care package"  which is fun. http://www.cureceliacdisease.org   this thread has some useful info -       
    • New to this gluten-free life
      So I just got diagnosed with celiacs and I felt like after all the testing and stuff I would finally get the information my fiancé and I so badly needed about what is wrong with me, but the doctor came in the room at our appt and spent about 15 minutes with us talking a little bit about cross contamination, then said I need to avoid gluten like i would arsenic then sent us on our way! So I guess I am looking for some good tips and information about what is really wrong with me! I know own it's an auto immune disease. I just feel scares because I am so uneducated about it and it's such a big change. I just want to know what to do and do it right so I feel better! 
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • Jmg  »  admin

      Hello Admin!
      I don't know whether this is of interest to post on your articles feed:
      http://pratt.duke.edu/about/news/window-guts-brain
      Kind Regards,
      Matt
      · 2 replies
    • 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
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,951
    • Most Online
      1,763

    Newest Member
    lfoisy
    Joined