• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • 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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-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:
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
Ads by Google:


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
      107,339
    • Total Posts
      935,565
  • Member Statistics

    • Total Members
      64,999
    • Most Online
      3,093

    Newest Member
    Con Smith
    Joined
  • Popular Now

  • Topics

  • Posts

    • It seems like you really need a concrete or near concrete answer so I would say maybe you ought to get the gene testing. Then you can decide on the gluten challenge.   Thanks! I am convinced our dogs are there waiting for us. Meanwhile they are playing, running, laughing, barking & chasing. I have another favorite quote dealing with dogs: "If a dog will not come to you after having looked you in the face, you should go home & examine your conscience."  ~~~ Woodrow Wilson ~~~
    • I can't help thinking that all of this would be so much easier if the doctor I went to 10 years ago would have done testing for celiac, rather than tell me I probably should avoid gluten. He was looking to sell allergy shots and hormone treatment, he had nothing to gain from me being diagnosed celiac. I've been messing around ever since, sort-of-most-of the time being gluten free but never being strict about it. I really feel like three months of eating gluten would do my body a lot of permanent damage. I've got elevated liver enzymes for the third time since 2008 and no cause can be found which might be good, I guess. I wonder if it would be reasonable to do the HLA testing first, to decide if I really need to do the gluten challenge. If the biopsy is negative, that is. Squirmingitch, love your tag line about dogs in heaven. We lost the best dog ever last December. I sure hope all my dogs are there waiting for me!
    • Most (90%-95%) patients with celiac disease have 1 or 2 copies of HLA-DQ2 haplotype (see below), while the remainder have HLA-DQ8 haplotype. Rare exceptions to these associations have been occasionally seen. In 1 study of celiac disease, only 0.7% of patients with celiac disease lacked the HLA alleles mentioned above. Results are reported as permissive, nonpermissive, or equivocal gene pairs. From: http://www.mayomedicallaboratories.com/test-catalog/Clinical+and+Interpretive/88906  
    • This is not quite as cut & dried as it sounds. Although rare, there are diagnosed celiacs who do not have either of those genes. Ravenwoodglass, who posted above, is one of those people. I think she has double DQ9 genes? Am I right Raven?  My point is, that getting the gene testing is not an absolute determination either way.
    • Why yes it is! jmg and myself are NCIS, I mean NCGS specialist/experts or is it NCGI people ourselves. posterboy,
  • Upcoming Events