Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Gluten A Possiblity Or Not? Need Help


topaz1

Recommended Posts

topaz1 Newbie

I was wondering if someone could give me advice on the whole celiac/gluten sensitivity issue and my situation. I have done gluten-free diets and not felt any relief from my GI symptoms: CONSTANT 24/7 bloating, pain nausea, acid reflux and constipation. I am sick every single minute of every day. I am always so bloated I am in pain. Nothing I do seems to help (and I have tried a lot).

I went on a gluten-free, sugar-free, dairy-free diet for almost three months and did not feel better. Later, I did (Company Name Removed - They Spammed This Forum and are Banned) testing and avoided all the food s that it said to including all wheat (it said I was allergic to gliadin, so I stayed away from gluten too), diary, white sugar, and a whole passel of other foods. After two months I felt exactly the same; I didn


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



mushroom Proficient

Hi, and welcome to the forum, Topaz.

I am sorry you are having such an awful time with foods. It is really frustrating when everything you eat makes you feel horrid. And frustrating to try so many different ways of eating and have none of them work for you.

If you have not already tried this, I would recommend an elimination diet. Cut out almost everything except a few safe foods - you may have some idea of what your safe foods are, but they could include chicken, white fish, rice, steamed veggies, applesauce, nuts, seeds, chicken broth soups with veggies. Eat only whole foods, nothing processed, (nothing that comes in a box), no grains (except rice unless that turns out to be a problem too), no coffee, no black tea, drink lots of water, no juices, no sodas, no artificial sweeteners, only salt and pepper as seasonings. Make sure you do not eat any soy, corn, peanuts, nightshade vegetables (tomatoes, potatoes, peppers, eggplant) and of course gluten. Once you have found a way of eating that does not make you feel ill, then you can add one food at a time every three or four days. Keep a food diary and symptom diary and record everything you eat and how you feel, because sometimes a food will not affect you for a day or two. If a food bothers you, scratch it off the list and try another. This way you will be able to build up a variety of foods that are safe for you and find the culprits that are bothering you.

It seems like most people who are gluten intolerant also have other food intolerances, and until you find out what those other intolerances are going gluten free may not make you feel much better. And a lot of these other intolerances can affect you the same way gluten does.

Why don't you give the elimination plan a try and see if it works for you? You may have to play around a little to find out what your basic safe foods are (e.g., you may not tolerate fish, or apples might be bad for you). Try chicken and rice and chicken broth only the first day, add in some veggies the next day, etc. While it is extremely restrictive, it is normally quite effective.

Do stay in touch and let us know how your eating plans are working out.

ravenwoodglass Mentor

I agree with Mushroom. For me it took an allergist to help with my starting foods and while it was a very boring way to eat for while it was what lead to me finally being diagnosed.

ktorange Newbie

Just a thought on this, but have you ever been tested for thyroid disease? It is not unusual to have celiac disease or be gluten intolerant and have some kind of endocrine disorder. If you are going to be tested for thyroid disease, read up on the internet on what tests you should have. Most doctors test only TSH levels, which I think is useless.

I hope you feel better soon!

cahill Collaborator

I agree with trying an elimination diet. I am currently doing one. My starting foods were Lamb,sweet potatoes ,peas,peaches and white rice,,,, nothing else for two weeks.Then I started very slowly trying foods one at a time giving time for a reaction ( or not ).I have been amazed at what foods are an issue and what ones are not.

Marilyn R Community Regular

It also helps to eat foods you've never, or rarely, eaten before. Wierd fruits or vegetables, meats.

Allergy skin prick testing helped me, I was right about some things I'd eliminated, wrong about others. And I've found it helpful to try and not eat things from the same food family on consecutive days. Mix things up. Protein, oil, starch, vegetable, sweetener. That could just be my experience, not necessarily your own experence.

BTW, great post Mushroom.

Good luck, wish you the best!

eatmeat4good Enthusiast

You may have to stay on the gluten free diet for longer to get results. Although some people get dramatic results quickly when going gluten free that is not the case for everyone.

Some people have taken months to get relief from their symptoms. Perseverance is the key. Mushroom gave you excellent advice on avoiding the main allergens and remember that if you have other food sensitivities you can have really severe reactions and inflammation. The elimination diet is the only way to determine what those are.

I had to learn the hard way about dairy, soy, or should I say SOY, as it makes me completely ill.

It may seem extremely difficult, but it will be worth it in the end, if you are able to get to the bottom of your food intolerances. Also be very vigilant about cross contamination of gluten. Lipstick kept me sick..it usually has wheat in it.

So hang in there. And be sure you are both checking your vitamins for gluten and taking the ones you are deficient in.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



T.H. Community Regular

Your problems do seem very indicative of a food issue, but yeah...it could be LOTS of different foods, I'm afraid. If going gluten free did nothing, then either that is NOT the issue, or it's not the only issue. The low vitamin levels would, I think, be more possible evidence that you are not digesting well.

For an elimination diet, if you wish to try one, here's something that helped us the most to track things down when i had no clue what it was.

- drop the 8 major allergens and their derived ingredients.

- make 2-3 daily menu plans. Have them not overlap on food companies, food families (like nightshades), and any food - not even your salt or oils. This way, any contaminant from a company or allergy to an entire family, or reaction to a food, will be separated. I'd stick to each daily menu plan for 2-3 days, then switch to the next, then the next, then repeat. Keep track of all reactions. Spacing them out this way might help your reactions space out so you can start to track them to a particular food.

And you need to look at EVERYTHING. For example, most salt has additives to keep it from caking, or corn to stabilize the iodine. Every little thing can have contaminants that can be hard to track down, so keeping food as simple as possilble can help.

Also to consider:

1) fructose malabsorption - this involves many foods, veggies, fruits, grains, etc... It's very hard to avoid the foods every meal if you don't know what to look for. Often has bloating, pain, and nausea. Safe diets can be found on the web for this. And curiously, it is often made worse by whole grains and 'healthy' foods, so it might be a candidate for you.

2) parasites. These often give you bloating, react to food, etc..

3) gut infections, like H. pylori. I know this one often gives acid reflux.

4) Might check out other unusual broad spectrum sensitivities, like histamine sensitivity, sulfite sensitivity (although I believe this one involves rashes, more often).

5) Crohn's disease. Have you been tested for this?

Hope that you find some relief soon, hon!

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Jay Heying replied to Jay Heying's topic in Gluten-Free Foods, Products, Shopping & Medications
      6

      Celiac friendly probiotics

    2. - Florence Lillian replied to Jay Heying's topic in Gluten-Free Foods, Products, Shopping & Medications
      6

      Celiac friendly probiotics

    3. - slkrav posted a topic in Introduce Yourself / Share Stuff
      0

      Gluten free beer ?

    4. - cristiana replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      16

      Ibuprofen

    5. - Mari replied to KathyR37's topic in Coping with Celiac Disease
      5

      New here


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,883
    • Most Online (within 30 mins)
      7,748

    Jrgrimes914
    Newest Member
    Jrgrimes914
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Jay Heying
      Thank you so much for the advice!! I will try to make a batch this weekend. Have a great weekend,
    • Florence Lillian
      In response to your questions regarding probiotics.  I have had Celiac for 40 years.  Stomach issues: digestion, IBS to chronic constipation, bloat after eating anything.  I was unable to eat a healthy variety of foods, tried probiotics supplements - some made me worse, others made no difference.  After reading about people with Crones, IBS, etc, who made their own probiotics I started making Milk Kefir: not water Kefir. There are 10 probiotics in milk KEFIR. After 3 weeks I was able to eat more, no gas, no IBS.  If you have a computer just ask for videos on making milk Kefir. I branched out and make my own Kombucha for even more probiotics. I do not make my yogurt because there are only about four probiotics in that. I started this when I was 82 and I still make my own Kefir and Kombucha. My stomach issues were fixed with the Milk Kefir alone. If you decide to try making it, make certain you order MILK GRAINS. The finished product tastes a bit like Buttermilk. I hope this helps in your journey to good health.
    • slkrav
      Help me out here. Lauren Dam gluten-free beer from Spain is listed as gluten free. Yet its made from Barley Malt. I thought barley and any form had gluten. Anybody have any more information about it?
    • cristiana
      Ferritin levels.  And see what your hemoglobin looks like too, that will tell you if you are anemic?  You can have 'low normal' levels that will not be flagged by blood tests.  I had 'low normal' levels, my lab reading was. c12, just over what was considered normal, but I had small benign lesion on my tongue, and sometimes a sore mouth, and a consultant maxillofacial ordered an iron infusion for me as he felt my levels were too low and if he  raised them to 40, it would help.   Because you are not feeling 100% it might be worth looking at your levels, then discussing with your doctor if they are low normal.  But I stress, don't supplement iron without your levels being monitored, too much is dangerous.
    • Mari
      Hi Katht -  I sympathize with your struggles in following a gluten-free diet and lifestyle. I found out that I had Celiac Disease a few months before I turned 70. I just turned 89 and it has taken me almost 20 years to attain a fairly normal intestinal  function. I also lost a lot of weight, down to 100 lb. down from about 140 lb. What Trents wrote you was very true for me. I am still elimination foods from my diet. One person suggested you keep a food diary and that is a good idea but it is probably best just to do an elimination diet. There are several ne and maybe one for celiacs. I used one for a while and started with plain rice and zucchini and then added back other foods to see if I reacted or not. That helped a great deal but what I did not realise that it would only very small amounts of some foods to cause inflammation in my intestine. Within the last few years I have stopped eating any trace amounts of hot peppers, corn and soy(mostly in supplements) and nuts, (the corn in Tylenol was giving me stomach aches and the nuts were causing foot pains). Starting an elimination diet with white rice is better than brown rice that has some natural toxins. In addition it is very important to drink sufficient plain water. You can find out how much to drink for your height and weight online. I do have difficulty drinking 48 ounces of water but just recently have found an electrolyte supplement that helps me stay well hydrated, Adding the water and electrolytes may reduce muscle cramps and gag spams you wrote about. . Also buy some anti-gluten enzyme capsules to take with meals. I use GliadinX advertised here. These are a lot of things to do at one time as they reflect my 20 years of experience. I hope you do what you can manage to do over time. Good luck and take care.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.