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

Need Advice


glutenfreegirl

Recommended Posts

glutenfreegirl Enthusiast

Ok this might be a little long so I apologize in advance....

So since finding out I have celiac, it was a big adjustment as we all know...but ok i can do this I thought...so I pulled up my big girl boots and went gluten-free, I had 2children along for the ride as the where both dxd ith it right after me....like children usually do I was able to heal them fast thank goodness...... Soon I will feel better and finally can get on with my life...WRONG....well for awhile I felt better maybe a week or 2, then came thyroid issues, and now major major digestive issues and with this all what seems to be an issues with being sensitive to ALL foods.

What gives? It has been 4yrs since this all started on and off gluten until a definite dxd in nov, along with dxd of hashi at same time, the digestive issues have always been there years and yrs before any thought of celiac. So gluten-free since nov and feel like I am only getting worse....I know many can relate but how do you cope? It is really effecting my life emotionally I am losing the fun carefree person I use to be...oh and I must confess I fear food now...as i never really know how I will feel after I eat....even something clean like a salad scares me.....phew thanks fir listening....big hugs


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



Celiac.com Sponsor (A8-M):



Coinkey Apprentice

I went through similar in the past few weeks, I discovered that I can't have soy or milk as well as gluten. Perhaps you are sensitive to another product like soy, milk, corn etc? I've never done one properly but you might benefit from doing the elimination diet to help you find what is causing the problems. Don't ask me how to do one... There are loads of people here who might be able to help with that and I'm sure your doctor can "help" too. (I'm pretty unimpressed with mine).

Kimbalou Enthusiast

All I can say is I feel your pain! I have been gluten-free since Nov. Some days are really good and some are really bad! I am really starting to fear food too. I think I'm eating things that are ok, but then I get sick. I switched to Almond milk, you might want to try that too if you think you have lactose intolerance. I don't know what the answer is. I just started a post with the same tone as your's...so I feel the same way today. I am really getting upset with hearing people at work announcing how they brought bagels, donuts, etc!! AAH!! I really need to start bringing gluten-free things to work to share...but the processed gluten-free foods are so expensive (donuts, etc.) I have a few gluten-free bakeries near me, but i don't want to spend a fortune for that kind of food. I think I'll just bring in chips and salsa to share. I need to make a point that people don't have to just bring in pastries.

Sorry for venting about my own issues on your post...hugs to you!!

RL2011 Rookie

I cope by eating nothing but whole foods. I mostly follow Mark Sisson's diet he outlines in his book The Primal Blueprint and use his cookbooks.

I had a problem trying to change the semi-processed foods I previously ate by using gluten-free ingredients in replace of wheat. So I decided to cut out all gluten-free breads, pasta, cookies, and the rest of the gluten-free processed stuff. I eat meat, fish, potato (mostly yams), vegetables, eggs, butter, olive oil, oats and a bunch of fruit. The only snacks I eat are the gluten-free occasional ice cream (Edy's or Hagen-Das).

I recently went to a local meetup for celiacs and do not understand why everyone duplicates the same old gluten-free version of the processed and lesser nutrient junk type foods and they wonder why they don't always feel better.

Eat good whole foods and make your family do the same. Law down the rules and demand the family follows these rules. They will fight you at first but thank you years latter.

Good luck with your decision.

Kimbalou Enthusiast

I cope by eating nothing but whole foods. I mostly follow Mark Sisson's diet he outlines in his book The Primal Blueprint and use his cookbooks.

I had a problem trying to change the semi-processed foods I previously ate by using gluten-free ingredients in replace of wheat. So I decided to cut out all gluten-free breads, pasta, cookies, and the rest of the gluten-free processed stuff. I eat meat, fish, potato (mostly yams), vegetables, eggs, butter, olive oil, oats and a bunch of fruit. The only snacks I eat are the gluten-free occasional ice cream (Edy's or Hagen-Das).

I recently went to a local meetup for celiacs and do not understand why everyone duplicates the same old gluten-free version of the processed and lesser nutrient junk type foods and they wonder why they don't always feel better.

Eat good whole foods and make your family do the same. Law down the rules and demand the family follows these rules. They will fight you at first but thank you years latter.

Good luck with your decision.

Do you eat regular oats? Are they ok to eat or should they be gluten-free oats? I buy the gluten-free oatmeal

YoloGx Rookie

Ok this might be a little long so I apologize in advance....

So since finding out I have celiac, it was a big adjustment as we all know...but ok i can do this I thought...so I pulled up my big girl boots and went gluten-free, I had 2children along for the ride as the where both dxd ith it right after me....like children usually do I was able to heal them fast thank goodness...... Soon I will feel better and finally can get on with my life...WRONG....well for awhile I felt better maybe a week or 2, then came thyroid issues, and now major major digestive issues and with this all what seems to be an issues with being sensitive to ALL foods.

What gives? It has been 4yrs since this all started on and off gluten until a definite dxd in nov, along with dxd of hashi at same time, the digestive issues have always been there years and yrs before any thought of celiac. So gluten-free since nov and feel like I am only getting worse....I know many can relate but how do you cope? It is really effecting my life emotionally I am losing the fun carefree person I use to be...oh and I must confess I fear food now...as i never really know how I will feel after I eat....even something clean like a salad scares me.....phew thanks fir listening....big hugs

Its very possible like some of the other people here have said that you have other sensitivities at work. For myself, I discovered I am very sensitive to salicylic acid, which is in most everything -- fruits and vegetables and herbs. If you react badly to aspirin, its likely you may have this condition. Often it goes with being very gluten sensitive. Its worth checking out by Googling low salicylate foods.

Meanwhile I second Richard's suggestion of eating basic foods that you put together from scratch. Its the best way to heal from the damage gluten has likely done to your gut over the years. At t his point with SS sensitivity, dietary choices are even less open than they were for me before, although I have to admit that now I can eat eggs and brown rice, whereas I couldn't before. Feeling better however makes it worth the trouble.

Other possibilities are candida overgrowth or dsybiosis due to some kind of intractable bacteria. A friend of mine has this last bit. He ended up having to go to a qualified naturopath to discover he has two stains of bacteria that are antibiotic resistant. He is getting rid of the critters by taking a strong herbal concoction and colloidal silver--plus he has to avoid sugary/starchy foods.

Good luck and let us know what you discover that makes you feel better.

Bea

glutenfreegirl Enthusiast

Thank you all, I do have some other food intolerances to dairy, soy, egg, corn, basically all the main ones connected to celiac issues......that's ok I get it and can deal...but some days it is like and avocado will bother me then the next it won't or the same for any clean food...that is what is making me crazy....should I just plug through unroll my gut heals ? I am did have a stool test done but it can take up to 3 weeks to get back the results ...ugh that just gone done Friday .....I guess I am getting anxious but after four yrs what's a few more weeks!, oh Richard as for the mRk sisson plan I do agree with that hoe ever I seem to have trouble digesting protein right now...believe itor not it can trigger anxiety after I have eaten it....I never knew of such a thing......we really do learn something every day.....I was thinking of the blood type diet too does anyone know much of that?


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



Celiac.com Sponsor (A8-M):



RL2011 Rookie

Do you eat regular oats? Are they ok to eat or should they be gluten-free oats? I buy the gluten-free oatmeal

I eat gluten-free Oats (Glutenfreeda). Looking for better oats though.

YoloGx Rookie

Thank you all, I do have some other food intolerances to dairy, soy, egg, corn, basically all the main ones connected to celiac issues......that's ok I get it and can deal...but some days it is like and avocado will bother me then the next it won't or the same for any clean food...that is what is making me crazy....should I just plug through unroll my gut heals ? I am did have a stool test done but it can take up to 3 weeks to get back the results ...ugh that just gone done Friday .....I guess I am getting anxious but after four yrs what's a few more weeks!, oh Richard as for the mRk sisson plan I do agree with that hoe ever I seem to have trouble digesting protein right now...believe itor not it can trigger anxiety after I have eaten it....I never knew of such a thing......we really do learn something every day.....I was thinking of the blood type diet too does anyone know much of that?

Have you tried taking digestive enzymes? Pancreatic enzymes may be what you still need even though you've been on an anti gluten diet for some time. Bromelain/papain alternatively could help by themselves, and/or eat pineapple and papaya, assuming you aren't allergic to them. Pro-biotics may also help.

The avocado could either be too oily for you (esp. if you eat a lot of it at once--or with other fatty food)or you could be partially sensitive to it due to either an specific allergy or what I have, salicylic acid sensitivity (SS).

SS might be worth looking into. Unfortunately there are no tests out there for SS other than recognizing symptoms and trial and error. Nevertheless, its actually relatively common. Anxiety and mood disorders often go along with SS sensitivity. Think of ADD and you will get the idea. Am just learning now there are various supplements like biotin which help counteract it.

Hang in there in any case!

Bea

cahill Collaborator

I was gluten free for over a year and I was still having issues so I went soy,corn and nightshade free . Still I had issues so I did an very strict elimination diet.

I discovered an allergy to eggs and to almonds on top of my food intolerances :ph34r: Once the almonds and eggs were removed from my diet my gut was able to start to heal.

Since I have been able to add dairy back into my diet :D

((HUGS)) to you

cahill Collaborator

Thank you all, I do have some other food intolerances to dairy, soy, egg, corn, basically all the main ones connected to celiac issues......that's ok I get it and can deal...but some days it is like and avocado will bother me then the next it won't or the same for any clean food...that is what is making me crazy....should I just plug through unroll my gut heals ? I am did have a stool test done but it can take up to 3 weeks to get back the results ...ugh that just gone done Friday .....I guess I am getting anxious but after four yrs what's a few more weeks!, oh Richard as for the mRk sisson plan I do agree with that hoe ever I seem to have trouble digesting protein right now...believe itor not it can trigger anxiety after I have eaten it....I never knew of such a thing......we really do learn something every day.....I was thinking of the blood type diet too does anyone know much of that?

If you are having trouble digesting proteins try digestive enzymes .

Once I had my gallbladder removed I also had trouble digesting fats . I have to be careful of the amount of fat I consume in a meal or major tummy issues happen <_< .

anabananakins Explorer

It's also worth looking into fructose malabsorption. Onion and apples were killers for me, once I eliminated them I felt heaps better. Look up Sue Shepherd and the FODMAP diet. Most of the research is coming out of Australia (Monash University). There are some threads here too.

glutenfreegirl Enthusiast

Hi ,thank you I will take all advice into consideration....anabanana I tried to find info on the fodmap plan and her website just says to make an apt with her....I could not find any books re library ect ...do you have any suggestions ? It does sound very interesting.....

anabananakins Explorer

Hi ,thank you I will take all advice into consideration....anabanana I tried to find info on the fodmap plan and her website just says to make an apt with her....I could not find any books re library ect ...do you have any suggestions ? It does sound very interesting.....

I don't know if there are any books about it, her research is pretty new. There is a yahoo group called "fructose_malabsorption_australia" that has lots of good info. I saw a dietician and she gave me a booklet. Here are some articles:

Open Original Shared Link

Open Original Shared Link

and here is the thread where I was asking about:

The dietician I saw said that it's about working the levels you can handle (so, very different to giving up gluten). There is breath testing they do, but she didn't think it was necessary because you can tell from how you feel. For example, I don't worry so much about tiny amounts of onion in pasta sauce, but I'd get a major stomach ache and bloating if I ate onion in stir fry. And not all of the "FODMAPs" will necessarily be a problem. Here are some examples from her website (don't take this as a comprehensive list):

* Excess Fructose: Honey, Apples, Mango, Pear, Watermelon, High Fructose Corn Syrup, Corn Syrup Solids

* Fructans: Artichokes (Globe), Artichokes(Jerusalem), Asparagus, Beetroot, Chicory, Dandelion leaves, Garlic (in large amounts), Leek, Onion (brown, white, Spanish, onion powder), Raddicio lettuce, Spring Onion (white part), Wheat (in large amounts), Rye (in large amounts), Inulin, Fructo-oligosaccharides.

* Lactose: Milk, icecream, custard, dairy desserts, condensed and evaporated milk, milk powder, yoghurt, margarine, soft unripened cheeses (eg. ricotta, cottage, cream, marscarpone).

* Galacto-Oligosaccharides (GOS): Legume beans (eg. baked beans, kidney beans, bortolotti beans), Lentils, Chickpeas

* Polyols: Apples, Apricots, Avocado, Cherries, Longon, Lychee, Nectarines, Pears , Plums, Prunes, Mushrooms, Sorbitol (420), mannitol (421), xylitol (967), maltitol (965) and Isomalt (953).

I don't do well with most of the foods listed under the fructose, fructans, lactose or polyols categories, but I don't seem to have issues with galacto-oligosaccharides, I eat refried beans and hummus all the time, no problem at all.

Even within some groups I've noticed differences. Chewing gum has sorbitol and even one piece makes me feel icky, but the isomalt in the cough lozenges I've had this week hasn't been a problem. So it's a lot of trial and error about quantities and types you can consume. Obviously, we don't have any gluten at all.

I haven't memorised all the lists of what I should and shouldn't have, as I find observing how I feel a useful learning experience. There were a lot of vegetables on the "poorly absorbed" list in the booklet I got that I'd always hated, I found that interesting. For me, after a lifetime of "vegetables are so good for you, you should eat more!" it was knowing that these things could cause problems that was the biggest help. For example, I couldn't understand why a home made stir fry was making me feel ill and bloated. Vegetables, lean chicken, a bit of oil - all good, right? Well, I was using a lot of onion in it and it turns out, onion is a known problem. Made it without onion: no stomach ache, no bloating up to the 6 months pregnant look.

I hope you find out whatever it is that is causing you problems :-)

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,684
    • Most Online (within 30 mins)
      7,748

    Betty Siebert
    Newest Member
    Betty Siebert
    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

    • Scott Adams
      I'd go with a vodka tonic, but that's just me😉
    • Rejoicephd
      That and my nutritionist also said that drinking cider is one of the worst drink choices for me, given that I have candida overgrowth.  She said the combination of the alcohol and sugar would be very likely to worsen my candida problem.  She suggested that if I drink, I go for clear vodka, either neat or with a splash of cranberry.   So in summary, I am giving ciders a rest.  Whether it's a gluten risk or sugars and yeast overgrowth, its just not worth it.
    • Inkie
      Thank you for the information ill will definitely bring it into practice .
    • Scott Adams
      While plain, pure tea leaves (black, green, or white) are naturally gluten-free, the issue often lies not with the tea itself but with other ingredients or processing. Many flavored teas use barley malt or other gluten-containing grains as a flavoring agent, which would be clearly listed on the ingredient label. Cross-contamination is another possibility, either in the facility where the tea is processed or, surprisingly, from the tea bag material itself—some tea bags are sealed with a wheat-based glue. Furthermore, it's important to consider that your reaction could be to other substances in tea, such as high levels of tannins, which can be hard on the stomach, or to natural histamines or other compounds that can cause a non-celiac immune response. The best way to investigate is to carefully read labels for hidden ingredients, try switching to a certified gluten-free tea brand that uses whole leaf or pyramid-style bags, and see if the reaction persists.
    • Scott Adams
      This is a challenging and confusing situation. The combination of a positive EMA—which is a highly specific marker rarely yielding false positives—alongside strongly elevated TTG on two separate occasions, years apart, is profoundly suggestive of celiac disease, even in the absence of biopsy damage. This pattern strongly aligns with what is known as "potential celiac disease," where the immune system is clearly activated, but intestinal damage has not yet become visible under the microscope. Your concern about the long-term risk of continued gluten consumption is valid, especially given your family's experience with the consequences of delayed diagnosis. Since your daughter is now at an age where her buy-in is essential for a gluten-free lifestyle, obtaining a definitive answer is crucial for her long-term adherence and health. Given that she is asymptomatic yet serologically positive, a third biopsy now, after a proper 12-week challenge, offers the best chance to capture any microscopic damage that may have developed, providing the concrete evidence needed to justify the dietary change. This isn't about wanting her to have celiac; it's about wanting to prevent the insidious damage that can occur while waiting for symptoms to appear, and ultimately giving her the unambiguous "why" she needs to accept and commit to the necessary treatment. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
×
×
  • 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.