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

New And Needing Some Words Of Wisdom (Or Just Plain Help)

Omma

Recommended Posts

Omma Rookie
Omma
Posted

I'm new here, been gluten free since June 2011, undiagnosed but suspect Celiac due to family issues. My question is: is it normal to get more and more sensitive as time goes on? Now even a crumb effects me, I don't eat anything if the word "spices" is on the label,etc.

Also, I'm becoming sensitive to other foods as well. No more sugar for me, not even fruit. I had some blueberry crisp this weekend and now today I feel terrible, so tired and achy. I also think I'm getting sensitive to dairy.

So, I've gone from excited about finally figuring out what's wrong (after about 45 years of feeling sick)to wondering where in the world this is all leading?? I felt so much better at first too. Now, I have some good days, but I really feel fatigued. My Naturopath wants me to test my blood sugar levels for a week and see if that is an issue.

I feel like all I do anymore is complain about how I feel. I try to excercise, but lately haven't had the energy.

I should mention too that I've been trying to gain some weight but instead I seem to be losing it.

Anyone out there have any words of wisdom? I could really use some about now....

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

Celiac.com Sponsor (A8-M):


heidi g. Contributor
heidi g.
Posted

lactose intolerant of course is very common with celiacs. i would suggest to start healing your gut. diet alone is not enough and it will take longer for you to feel better. imagine your gut inflamed and swollen. now imagine rubbing salt into a wound. if you put acidic foods such as ketchup, salt, refined sugar, carbonating drinks, alcohol, pineapples, etc your going to be in pain and feel sick. i would stay away from spices. you need to heal your gut before you try even gluten free foods because your guts not able to digest well due to it being so damaged and inflamed. leaky gut syndrome is associated with celiacs disease so i would look up the diet for that to help heal your gut. eat bland foods for a week such as plain rice and steamed vegetables. scrambled eggs for protein, rice chex, no milk, no soy milk, no sugar. drink hot herbal teas such as ginger, chamomile. if u need a sweetner add a little bit of honey. sip on warm water between meals and sip on cold water before meals. chew your food 6 times before swallowing and take L -glutamine (amino acid known to heal the gut) once 1 hour before breakfast and 1 hour before dinner. take 3 papaya tablets after meals (its a digestive enzyme) eat only cooked vegetables (raw are too hard to digest) take a child's multivitamin for now until you see progress (healing) in your gut because the iron content in adults vitamins is higher and can constipate you therefore making your stomach feel worse. also take or eat something with fiber. its time to take your life back.

jswog Contributor
jswog
Posted

you need to heal your gut before you try even gluten free foods because your guts not able to digest well due to it being so damaged and inflamed.

HUH???? How are you going to heal if you don't go gluten free???? This makes NO SENSE!!!!!

To OP - Please keep eating gluten free! It is the ONLY way you will heal!

mushroom Proficient
mushroom
Posted

To heidi's excellent advice, I would add a probiotic supplement to help restorer the good flora in your gut and help it heal. If you need milk, hemp and almond are both delicious.

jswog Contributor
jswog
Posted

I'm new here, been gluten free since June 2011, undiagnosed but suspect Celiac due to family issues. My question is: is it normal to get more and more sensitive as time goes on? Now even a crumb effects me, I don't eat anything if the word "spices" is on the label,etc.

Also, I'm becoming sensitive to other foods as well. No more sugar for me, not even fruit. I had some blueberry crisp this weekend and now today I feel terrible, so tired and achy. I also think I'm getting sensitive to dairy.

So, I've gone from excited about finally figuring out what's wrong (after about 45 years of feeling sick)to wondering where in the world this is all leading?? I felt so much better at first too. Now, I have some good days, but I really feel fatigued. My Naturopath wants me to test my blood sugar levels for a week and see if that is an issue.

I feel like all I do anymore is complain about how I feel. I try to excercise, but lately haven't had the energy.

I should mention too that I've been trying to gain some weight but instead I seem to be losing it.

Anyone out there have any words of wisdom? I could really use some about now....

It does sound to me like maybe you've developed some additional intolerance: dairy, soy, corn, etc., though many people DO report becoming more and more sensetive the longer they are gluten free. And I'm sure keeping an eye on your blood sugar cannot hurt anything, so what harm is it? Even if it does no good and leads you to nothing, IMHO it would be worth trying to see. Good luck in finding out what's gong on!

Marilyn R Community Regular
Marilyn R
Posted

Hi Omma,

Welcome to the forum and good luck. It isn't uncommon to develop other food intolerances, and dairy is one of the first offenders. You may need to give up dairy for awhile. There are plenty of substitutes, (almond, rice, hemp milk, my personal favorite became canned coconut milk from an oriental or Indian store that didn't contain soy additives. Because soy can become a problem, as can corn, nightshade vegetables (didn't happen to me, but occurs, and the fructose issue like you described isn't uncommon.

It took me quite awhile to heal. It was 18 months before I was willing to challenge dairy again, but I can now tolerate it in all shapes and forms. I haven't had the desire to challenge soy or corn.

If you want to look into this more, there is a good search engine on the forum.

In the meantime, there are so many things to eat, but you need to cook like your grandmother did, by scratch. Most processed foods contain wheat or soy or corn.

I don't think that herbs can hurt you, unless you're allergic to them or if you double dipped measuring spoons into them when you weren't gluten-free.

Allergy testing helped me too.

Good luck, hope this helps!

heidi g. Contributor
heidi g.
Posted

i never said to not eat gluten free- i cant seem to find where ive said that. you need to start eating foods to heal your gut. all the foods ive mentioned are gluten free and apart of the leaky gut diet (which is gluten free- ive combined 3 diets into one- the candida diet, the gluten free diet, and the leaky gut diet) everyhing is gluten free, and it will heal your gut. to feel better you start small and then add more foods like raw vegetables, etc. eating simple is the key to feeling better faster.

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

Celiac.com Sponsor (A8-M):


jswog Contributor
jswog
Posted

i never said to not eat gluten free- i cant seem to find where ive said that.

That was an exact quote from you to which I responded. You said to not try gluten free foods!

heidi g. Contributor
heidi g.
Posted

oh i meant heal the gut before indulging in all the gluten free foods because even alot of gluten free foods can still be irritating to the stomach. my diet is completely gluten free. i apologize for not phrasing it correctly

Jestgar Rising Star
Jestgar
Posted

That was an exact quote from you to which I responded. You said to not try gluten free foods!

I think she meant to say the substitutes, as an prepackaged things. Stick to whole foods.

Takala Enthusiast
Takala
Posted

There is almost nothing worse than grabbing a commercially made gluten free manufactured food when you're hungry, and then the thing sits in your stomach like a rock or worse, because you can't tolerate one of the other ingredients.

Not only does the thing usually cost a fortune, but you now feel awful, :ph34r: and could have felt better if you had just gone for the non- specialty item that tastes better, and is coincidently gluten free anyway!

In general, it is not uncommon to find one's self becoming more sensitive to cross contamination as time progresses, I think part of this is that the overall inflammation is down and the immune system is not in constant hyperdrive anymore, so you notice things more easily, like driving a smooth road and then hitting a big pothole instead of driving on a rippled road all the time.

The typical "Western" high carb high grain diet doesn't work well for alot of us older folk, the more protein, good fats, and vegetables we eat, and the less carbs, the better off we tend to do. Try to avoid "modified food starches" as they are very difficult to digest for anybody. Good fats can be found in coconut products such as coconut milk, coconut oil, olive oil, avocado, nuts, eggs, plain chocolate.

heidi g. Contributor
heidi g.
Posted

i have found avocados, chocolate, coconut milk, and nuts to be irritating to the gut aswell. going gluten free stops more inflammation my goal to get across is you need to heal the inflammation. going gluten free is a step but its part of the solution. you need to heal your gut before you can digest and really feel better.

Omma Rookie
Omma
Posted
  • Author

Thankyou everyone for all the info. After reading everyones responses, I think maybe my problem is I'm eating gluten free, whole foods, but maybe the wrong kinds...too hard on my digestion. I've been eating a lot of avocadoes this last week, they taste so good and I thought they would be good for me, but maybe that's one of the reasons I don't feel well..that and the chili I made the other night. My naturopath hasn't said anything about eating easy to digest foods. Just stay away from gluten and sugars. I don't drink milk, I use almond milk and I'm eating goat cheese, but I probably consume more dairy than I should.

I do take a good probiotic. So basically I need to eat more like I'm recovering from the flu or something?

Omma Rookie
Omma
Posted
  • Author

lactose intolerant of course is very common with celiacs. i would suggest to start healing your gut. diet alone is not enough and it will take longer for you to feel better. imagine your gut inflamed and swollen. now imagine rubbing salt into a wound. if you put acidic foods such as ketchup, salt, refined sugar, carbonating drinks, alcohol, pineapples, etc your going to be in pain and feel sick. i would stay away from spices. you need to heal your gut before you try even gluten free foods because your guts not able to digest well due to it being so damaged and inflamed. leaky gut syndrome is associated with celiacs disease so i would look up the diet for that to help heal your gut. eat bland foods for a week such as plain rice and steamed vegetables. scrambled eggs for protein, rice chex, no milk, no soy milk, no sugar. drink hot herbal teas such as ginger, chamomile. if u need a sweetner add a little bit of honey. sip on warm water between meals and sip on cold water before meals. chew your food 6 times before swallowing and take L -glutamine (amino acid known to heal the gut) once 1 hour before breakfast and 1 hour before dinner. take 3 papaya tablets after meals (its a digestive enzyme) eat only cooked vegetables (raw are too hard to digest) take a child's multivitamin for now until you see progress (healing) in your gut because the iron content in adults vitamins is higher and can constipate you therefore making your stomach feel worse. also take or eat something with fiber. its time to take your life back.

Thanks so much! I'll try your suggestions. Guess I was just eating too much too soon.

Omma Rookie
Omma
Posted
  • Author

i have found avocados, chocolate, coconut milk, and nuts to be irritating to the gut aswell. going gluten free stops more inflammation my goal to get across is you need to heal the inflammation. going gluten free is a step but its part of the solution. you need to heal your gut before you can digest and really feel better.

Wow, I eat a lot of nuts... this is getting a bit overwhelming. I'm supposed to be gaining weight, but with all these restrictions and not feeling well it's sure hard. Hmmm maybe more soups...

mushroom Proficient
mushroom
Posted

Soups and stews are good. But everyone's experience is different. Avocados were a life-saver for me, not a problem at all. You will have to explore your way through foods because everyone's reactions are different, and keeping a food and symptom diary is the best way to do this. Don't forget that sometimes the symptoms can be delayed - that is why the diary, so you can pick up a pattern.

Almonds are generally considered to be a safe nut, but again, triall them, don't just blindly accept them as being good for YOU.

Omma Rookie
Omma
Posted
  • Author

Soups and stews are good. But everyone's experience is different. Avocados were a life-saver for me, not a problem at all. You will have to explore your way through foods because everyone's reactions are different, and keeping a food and symptom diary is the best way to do this. Don't forget that sometimes the symptoms can be delayed - that is why the diary, so you can pick up a pattern.

Almonds are generally considered to be a safe nut, but again, triall them, don't just blindly accept them as being good for YOU.

I've been advised to keep a food diary, seems like such a pain, but I'm rethinking that. I can see it would be a real help right about now. It's hard to remember what I ate 2-3 days ago or how I felt a week ago when I ate something. So I think I'll start doing that, thanks for the advice!

heidi g. Contributor
heidi g.
Posted

trust me its a pain in the butt. try eating rice and steamed vegetables. eat boiled eggs (for protein) eat spinach (they have a natural anti inflammatory product in them, forgive me i forgot what it's called but it starts with a B) eat salads with no dressing you could possible put a lil bit of salt and olive oil and make your own dressing for a little flavor. eat alot of rice. it's easy to digest and you will usually start to feel better after 3 days. watch out for the soups, especially in cans, because they have wheat in the broth! and Bolivian cubes have wheat in them too. you could be eating hidden wheat. stick to fresh foods. bananas coat your stomach/intestines. hot ginger tea works wonder too. feel better :) the diet really stinks and tastes bad but the better you follow the diet the better you start to feel faster. i felt 60% better within a week!

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,243
    • Most Online (within 30 mins)
      7,748
    Maya Baum
    Newest Member
    Maya Baum
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      Accuracy of testing concerns

      By knitty kitty · Posted

      Welcome to the forum, @McKinleyWY, For a genetic test, you don't have to eat gluten, but this will only show if you have the genes necessary for the development of Celiac disease.  It will not show if you have active Celiac disease.   Eating gluten stimulates the production of antibodies against gluten which mistakenly attack our own bodies.  The antibodies are produced in the small intestines.  Three grams of gluten are enough to make you feel sick and ramp up anti-gluten antibody production and inflammation for two years afterwards.  However, TEN grams of gluten or more per day for two weeks is required to stimulate anti-gluten antibodies' production enough so that the anti-gluten antibodies move out of the intestines and into the bloodstream where they can be measured in blood tests.  This level of anti-gluten antibodies also causes measurable damage to the lining of the intestines as seen on biopsy samples taken during an endoscopy (the "gold standard" of Celiac diagnosis).   Since you have been experimenting with whole wheat bread in the past year or so, possibly getting cross contaminated in a mixed household, and your immune system is still so sensitized to gluten consumption, you may want to go ahead with the gluten challenge.   It can take two years absolutely gluten free for the immune system to quit reacting to gluten exposure.   Avoiding gluten most if the time, but then experimenting with whole wheat bread is a great way to keep your body in a state of inflammation and illness.  A diagnosis would help you stop playing Russian roulette with your and your children's health.      
    • trents
      Accuracy of testing concerns

      By trents · Posted

      Welcome to the celiac.com community, @McKinleyWY! There currently is no testing for celiac disease that does not require you to have been consuming generous amounts of gluten (at least 10g daily, about the amount in 4-6 slices of wheat bread) for at least two weeks and, to be certain of accurate testing, longer than that. This applies to both phases of testing, the blood antibody tests and the endoscopy with biopsy.  There is the option of genetic testing to see if you have one or both of the two genes known to provide the potential to develop celiac disease. It is not really a diagnostic measure, however, as 30-40% of the general population has one or both of these genes whereas only about 1% of the general population actually develops celiac disease. But genetic testing is valuable as a rule out measure. If you don't have either of the genes, it is highly unlikely that you can have celiac disease. Having said all that, even if you don't have celiac disease you can have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms as celiac disease but does not involve and autoimmune reaction that damages the lining of the small bowel as does celiac disease. Both conditions call for the complete elimination of gluten from the diet. I hope this brings some clarity to your questions.
    • McKinleyWY
      Accuracy of testing concerns

      By McKinleyWY · Posted

      Hello all, I was diagnosed at the age of 2 as being allergic to yeast.  All my life I have avoided bread and most products containing enriched flour as they  contain yeast (when making the man made vitamins to add back in to the flour).  Within the last year or so, we discovered that even whole wheat products bother me but strangely enough I can eat gluten free bread with yeast and have no reactions.  Obviously, we have come to believe the issue is gluten not yeast.  Times continues to reinforce this as we are transitioning to a gluten free home and family.  I become quite ill when I consume even the smallest amount of gluten. How will my not having consumed breads/yeast/gluten for the better part of decades impact a biopsy or blood work?  I would love to know if it is a gluten intolerance or a genetic issue for family members but unsure of the results given my history of limited gluten intake.   I appreciate the input from those who have gone before me in experience and knowledge. Thank you all!
    • trents
      A little about me and my celiac disease

      By trents · Posted

      I know what you mean. When I get glutened I have severe gut cramps and throw up for 2-3 hr. and then have diarrhea for another several hours. Avoid eating out if at all possible. It is the number one source of gluten contamination for us celiacs. When you are forced to eat out at a new restaurant that you are not sure is safe, try to order things that you can be sure will not get cross contaminated like a boiled egg, baked potatos, steamed vegies, fresh fruit. Yes, I know that doesn't sound as appetizing as pizza or a burger and fries but your health is at stake. I also realize that as a 14 year old you don't have a lot of control over where you eat out because you are tagging along with others or adults are paying for it. Do you have support from your parents concerning your need to eat gluten free? Do you believe they have a good understanding of the many places gluten can show up in the food supply?
    • Peace lily
      Gluten Free Coffee

      By Peace lily · Posted

      Okay went online to check green mountain k cups .It was said that the regular coffees are fine but they couldn’t guarantee cross contamination.with the flavors. im trying to figure out since I eliminated the suyrup so far so good. I’m hoping. thanks it feels good to listen to other people there views.
×
×
  • 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.