• 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Given Up
0

9 posts in this topic

I'm 16 and been diagnosed for 18 months. I'm still not even close to being back to 'normal'. I'm very strictly Gluten free and I also can't eat Gluten free oats, barley malt extract. I'm very super sensitive even products labelled as 'Gluten Free' still make me ill. I'm beginning to lose hope, my consultant said from blood tests etc I should be better as my TTG levels are back to a normal level, but nothing is improving. I still wake up every day knowing I'm going to feel ill and exhausted. I'm doing my GCSE's at the moment and I've been struggling through that, and it's totally degrading knowing that I'll most likely be feeling like this through college as well. It's starting to affect me mentally as well now and no one even understands. Most people just assume 'oh she can't eat Gluten, that's it'. Instead of realising how much it affects people when they can't do normal things from feeling so bad. And also I know I won't do the best of my ability in my exams, but throughout life I will be up against people who have had a normal life during their exams and I will never be the best I can. And the hospital aren't helping at all, I've been told there's nothing they can do and I just have to 'deal with it'. Well I can't anymore and I've completely given up. 

0

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


You may way to try doing more elimination diets, you could also be reacting to other things as well. A lot of people on here are sensitive and have had to give up A LOT of things. 

 

Don't give up, I know exactly how you feel. I am ill and in pain on a daily basis because of a pituitary tumor, and I am only 26. It sucks like no other to be young and not feel like everyone else. Stay strong and if you need someone to talk to, I am here, and so is everyone else on here. 

 

*hugs*

0

Share this post


Link to post
Share on other sites

What other things would you reccomend I eliminate from my diet:-(?

0

Share this post


Link to post
Share on other sites

A lot of people have cut out dairy, soy, corn, casein, nightshades, rice, nuts and some other stuff.

0

Share this post


Link to post
Share on other sites

Also another idea is to strip you diet down to a few foods, then slowly (and by this i mean about once a week or so) add something back in. That way you can tell whether or not that specific food is bothering you.

 

Do you take vitamin supplements? You may be vitamin deficient somewhere and that may be whats causing you to feel so bad.

0

Share this post


Link to post
Share on other sites
Ads by Google:


Your best is YOUR BEST regardless of what anyone else does! It is a difficult lesson to learn but an important one. Trust me, I've spent a lot of time wondering why I seemed to struggle more than my colleagues until this was uncovered. You might read The Four Agreements. It's a short, simple read but such wise life information.

Be sure to check your vitamins, toothpaste, mouthwash, shampoo, etc. If you can make it to a nutritionist who KNOWS Celiac, do so.

Many Celiacs don't make it to college. I think of all my experiences there while not understanding why I was always sick or having accidents. oy! A counselor told me to turn each negative I said about myself into two positives i.e. instead of berating myself for being late to class, acknowledge myself for GOING to class or even for being at school at all.

I don't think you're experiencing anything all of us haven't gone through at some point. Don't be too hard on yourself. Most of us would never talk to a friend the way we talk to ourselves. Learning to treat ourselves with compassion is a lifelong journey.

Keep your chin up and congratulations on your schooling. You may have to work harder but you are stronger for it. Remember that because it's true even if you don't yet realize it. Hang in there.

Blessings,

Cali

1

Share this post


Link to post
Share on other sites

I'm very strictly Gluten free and I also can't eat Gluten free oats, barley malt extract. I'm very super sensitive even products labelled as 'Gluten Free' still make me ill. 

 

 

Nobody should be eating alleged "gluten free" oats until they are completely healed and can see how the stuff affects them.  A significant percentage of celiacs/gluten intolerants cannot handle 'gluten free' oats.  Dietitians who suggest otherwise should have their credentials questioned.  Nobody should eat barley malt extract, period.  Gluten free codex crap can contain wheat starch, avoid that garbage like the plague, also, whoever thought wheat starch is safe and conned the regulators to let it into gluten free food should have their heads examined.   If you are extra sensitive, you should consider going grain free, higher protein, higher fat, such as a modified Paleo or SCD type diet. You can find websites on the internet for this, try looking at a sports/exercise themed site, as they are more concerned with how one feels as opposed to how much one weighs.  Avoid processed food as much as possible, and eat things such as fresh fruit, vegetables, nuts, seeds, eggs, good fats from olive oil, avocado, coconut, etc, meat, poultry, and fish.  Maybe some plain rice, or plain, uncontaminated rice cakes.  You can use gluten free "flours" made of nuts, seeds such as buckwheat, or coconut flour, and you can bake muffins in the microwave in a minute and a half.  Keep a food diary and note how you feel each day. 

 

 

....

but throughout life I will be up against people who have had a normal life during their exams and I will never be the best I can.

 

My observation during school years was that the majority of "normal" people were wasting their potential by doing anything but studying, and getting very drunk every single weekend, because they assumed their parents were always going to pick up the slack for them and then get them a job after they "graduated."   All in all, things even out.   I'm over 4 times as old as you, isn't it a bit early to consider throwing in the towel, already ?

0

Share this post


Link to post
Share on other sites

Hi,

 

With celiac you need to avoid all wheat, rye and barley. And as was said earlier, you should avoid oats also for a while at least.  Really you shouldn't try eating oats until you are feeling better for a couple months straight.

 

If you aren't getting better it could be either another condition affecting you or you are still eating something that is irritating your gut.  Sometimes we develop more food intolerances beyond gluten.  Soy is a big one, and it in most processed gluten-free food products, and many regular food products too.  Dairy is also a big one, and nightshades (tomatoes, potatoes, peppers eggplant).

 

If you can do a whole food only diet for a few months and no processed gluten-free foods it may help.  But remember to eliminate the common food issues like soy and dairy and nightshades.  Test the again when you are feeling better for a while.  Don't forget to check your vitamin pills and meds for gluten and soy and dairy.  At some point in your diet testing you should also eliminate all your vitamins and add them back one at a time.

 

If you are eating something that is irritating your gut on a continual basis it is no wonder you feel poorly.  The detective work to find out what that something is in your court.  No one else can figure that out for you, You will need to become a food detective.  All of our bodies are individual and we have to test our reactions to various foods to find out for ourselves.  But if you do find a food that is irritating your body and remove it the change/improvement can be significant.  Look up elimination diets and you find get some ideas.  There are quite a few threads on this forum about them.  It's worth taking the time to do a little food sleuthing/experimenting on yourself.

0

Share this post


Link to post
Share on other sites

Don't give up! At least you know what's wrong: something you're eating is hurting you. If I'd known that gluten was causing my depression and other issues in university, things would have gone a lot smoother.

 

As others have mentioned here, a few things you can do:

- reassess the "gluten-free"ness of anything you're eating. That includes anything labelled gluten free. It could still have been made on the same lines as gluten. Or if made in the same bakery/restaurant as gluteny things. Check all your bathroom stuff, medication, etc etc.

- with that ruled out, dairy and soy are very common as food intolerance. I'd say try cutting dairy first, then soy, then if that still isn't helping, do a full-on elimination diet to see what's going on (cut down to a few basic safe foods and add things in once a week to see if you react to it). It can take several months to feel better after going dairy/soy/whatever free.

- keep a food diary and record your symptoms.

- take your vitamins (make sure they're gluten-free, of course). B12, D, all the good brain stuff.

 

Good luck!

Hugs

Peg

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
      106,802
    • Total Posts
      932,558
  • Member Statistics

    • Total Members
      64,294
    • Most Online
      3,093

    Newest Member
    Alisha Patel
    Joined
  • Popular Now

  • Topics

  • Posts

    • You're right on the extremes, I'm sitting in a gluten-free food festival right now and still unsure if to eat anything which I guess means I've hit the extreme end of the scale. Seem to be noticing the recovery pattern over the course of 6 weeks or so after a gluten hit. Will be very interesting to see what the blood test readings come out like when I eventually get them done again. And thanks for the good wishes
    • Your getting plenty of proteins for once and I would drop the L-glutamine supplement what brand is it? Paleo Protein as in the brand? They were not gluten free last I checked, I got sick from it 2 years ago or so when they changed to a non dedicated facility.
    • Very interesting. However, my positive on the DGP test is on the combined assay. When separated into IGA and IGG they are within normal range. Twice the IGA was a point or two above normal range, which can be easily disregarded per University of Chicago.  Much of the research done on NCGS is showing activation of cells which are different then in celiac. Placing it still in a gluten related illness spectrum, but an entirely different kind of mode of transport, if you will, then celiac disease. Odd, because I am pretty sure I read that 1st degree relatives of celiacs have a higher prevalence of NCGS suggesting it is, in part, that they are related. But I cannot recall where I read that.  I think my specialist doc is following the right track given that all of this began at the tail end of a 6 week challenge in 2015/16 and I have an increase in IELs.  which, as I've stated before, is a very non-specific finding however. Symptoms continued On a gluten free diet for me months after.  however I was only on it for that 3 months after they found some inflammation. So maybe I didn't give it long enough.  Or like I said, maybe it's something else. We shall see! 
    • Thank you for your replies, everyone! It was very helpful. I don't think I am comfortable with passing the whole gluten introduction diet again and getting that rash. Or, even getting the rash on my face flared up again. It actually might be a good thing I got 'glutened' at that bd party so I could finally make connection with all the symptoms. As I thought back about my 'allergy' rashes I start wondering if it could be related to gluten all those years but no one even suspected. For example, at some point I started getting itchy rash around my knees, spreading down to ankles (front of the legs) in summer. The dermatologist and GP said it is 'sun allergy'. The usual allergic treatments helped for the itch and the patchy scales slowly healed but it flared up on the same place during the summer multiple times. The strange thing is that it never flared up when I went hiking, or walking in the sun in the city (I have extremely low vit D levels and I need to supplement, so it was no-no to stay completely covered no matter the rash...I needed my natural vit D). The rash only appeared after beach visits. At some point I started washing and drying my skin with a towel every time I went out from the sea, the rash still appeared but I was able to control it so it showed up on day 4-5 when vacation was almost over. Then, last summer after I was completely gluten and dairy free for approximately 9-10 months, and I was annoyed of washing my skin each and every time and getting those weird looks on the beach, I stopped doing it. I was prepared with medicine and creams for that rash but guess what - my 'sun allergy' was mysteriously gone. Not a single blister, not a patch of itchy skin, nothing. Another 'allergy' case of mine is that I found from my own bad experience I got very bad rash from red dyes (in food or cosmetics). If it is food it shows on my face, if it is cosmetics (soaps, perfumes)...whenever I applied it. I am now reading that people with dh should stay away from red dyes. Mere coincidence? I don't know, I am more and more suspicious I could have this DH thing going on for years, if that is DH. I am just annoyed that all the dermatologists I went to during all those years never made connection. No one even suspected. It was the usual path - cortisone creams, pills, etc. At some point cortisone creams were no longer working so they started prescribing some mixtures made in the pharmacy specifically for me with sulfur. That worked like a charm but I couldn't walk around all covered in white cream looking like a mummy (long sleeves in summer here where I live and summer = 35-38 C, is not fun). Then, I tried homeopathy....it worked like a charm but of course those rashes kept appearing and disappearing, I was only able to control the itchy skin so I don't scratch, scratch, scratch...looong, long journey! Sorry about my rant...and, one more time thank you everyone who found the time to reply and share your opinion! Much appreciated!
    • Found this old thread when researching for my daughter who might be having an endoscopy in September. I'm curious to know what the results were?
  • Upcoming Events