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Possibility Of Food Intolerances? Suggestions Needed!

jamiecasabellameeks

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jamiecasabellameeks Apprentice
jamiecasabellameeks
Posted

Hi, everyone!! I was diagnosed with Celiac Disease approximately 1 month ago, and I have been gluten free 1 1/2 months! I really do feel a lot better but still not "normal".  I know and understand that it takes a WHILE for your body to heal from all of the damage.  I am trying to be patient, but I really do feel that I have some intolerances to other foods as well (possibly soy, dairy, sugar).  I have been in denial...because well, I felt like I had already given up so much!!  :unsure:

 

I now realize, however, that I just have to do this 100%, regardless, if I want to feel 100% better! I just need advice on the best way to go about it!  Should I go to my GP and ask to be tested for other food intolerances (or do they even do that)?  I must add that I live in Mississippi...The Celiac diagnosis, from my personal experience, is not always well accepted and is thought of as a "fad".  Feel a little lost at times...not knowing where to turn...

 

I don't REALLY want to just cut everything out without actually KNOWING what is causing me to not feel well?? I just want proof, I guess.

 

What are your experience?? I would really like to hear...I have learned more from the stories on this forum than from any doctor or dietician that I have seen!

 

Thanks in advance for your help!!!!!!!

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shadowicewolf Proficient
shadowicewolf
Posted

You could try removing dairy for a while and see what happens. Some celiacs don't handle dairy very well when they are healing.

kareng Grand Master
kareng
Posted

Don't you have an actual diagnosis from a doc? If you have a doctor that thinks Celiac isn't real, you should get another doctor.

The best way to see if you are intolerant to a food is an elimination diet and food diary. I think you should give the gluten-free diet a few more months before you try to eliminate most all foods and try them on at a time. Don't eat dairy and gluten-free oats ( if you are eating them) and give it a few months.

jamiecasabellameeks Apprentice
jamiecasabellameeks
Posted
  • Author

Don't you have an actual diagnosis from a doc? If you have a doctor that thinks Celiac isn't real, you should get another doctor.

The best way to see if you are intolerant to a food is an elimination diet and food diary. I think you should give the gluten-free diet a few more months before you try to eliminate most all foods and try them on at a time. Don't eat dairy and gluten-free oats ( if you are eating them) and give it a few months.

I do have a diagnosis from my GI doc.  My GP is actually the one who referred me for testing, but even he admitted that he didn't know much about it.  I was referred to a dietician.  I felt like I found more on google and was more prepared for the meeting than him.  He has actually only worked with one other Celiac.  My family members (who have symptoms and SHOULD get tested) are hesitant to believe that it's as serious of a condition as I make it out to be...Sad, really, but true.  So, now I feel like I just have to PRETEND to feel better just to not have to listen to anyone saying anything about how I'm overreacting, etc...

 

I guess the weirdest thing about it is...I was feeling SO GOOD last week...so much so that I thought I was "healed".  What changed!?! Why do I feel bad all of a sudden?  This is the most confusing disease, truly.  I mean, I can't figure if I've glutened myself somehow (my kids still eat it) or if I have some other intolerance...

dilettantesteph Collaborator
dilettantesteph
Posted

I read up on testing for food intolerances.  It seemed like the tests are expensive and not very accurate.  You can use them as starting points for challenge/elimination dieting, but you still have to do those diets to be sure of what bothers you.  Your problem may not be other food intolerances anyway.  It may be that you are sensitive to the low levels of gluten allowed in gluten-free foods.  The levels tolerated vary widely.  In any case, it helps to keep a food journal and do challenge/elimination dieting.  Basically, if you think that something bothers you, stop eating it and see what happens.  If you are uncertain, start eating it again and see what happens.  

 

I also felt much better when I first went gluten free and then started having problems again.  I had to learn a lot more about avoiding gluten before I could be completely symptom free.  I hope that you feel better soon.

jamiecasabellameeks Apprentice
jamiecasabellameeks
Posted
  • Author

I read up on testing for food intolerances.  It seemed like the tests are expensive and not very accurate.  You can use them as starting points for challenge/elimination dieting, but you still have to do those diets to be sure of what bothers you.  Your problem may not be other food intolerances anyway.  It may be that you are sensitive to the low levels of gluten allowed in gluten-free foods.  The levels tolerated vary widely.  In any case, it helps to keep a food journal and do challenge/elimination dieting.  Basically, if you think that something bothers you, stop eating it and see what happens.  If you are uncertain, start eating it again and see what happens.  

 

I also felt much better when I first went gluten free and then started having problems again.  I had to learn a lot more about avoiding gluten before I could be completely symptom free.  I hope that you feel better soon.

Thank you for your comment!  I think at the beginning of this I thought I wouldn't be one of the "sensitive ones"...I'm starting to feel otherwise now.  Like tonight, my husband's family cooked dinner...Of course, I couldn't eat a thing and DIDN'T! BUT...my 3 kids DID! Despite thorough hand-washing and trying to not touch anything, I feel HORRIBLE! I just don't think I can even go over there anymore.  It all seems ridiculous, but I know that's why I'm feeling this way...because I haven't eaten anything! How do you stay away from it completely?? That's what I'm having the hardest time with right now.  I feel like I need cover myself in plastic wrap when I go in public!  So hard to explain that to "non-Celiacs".  That's why I'm so thankful for this forum.  It's at least a little relief to just know you are not alone!

mushroom Proficient
mushroom
Posted

You have to learn to carry safe food with you wherever you go.  Always keep gluten free food in the car, in your purse, and take a meal with you when invited out to eat.  Always make sure your food is on a clean plate or on a paper towel on the counter, just take precautions, cover food you microwave.  You don't have to talk to anybody about it or explain anything to anyone beyond saying that you are intolerant of gluten and cannot eat food prepared by people who dont know how to keep it gluten free.  You can say it is hard enough for you to keep yourself gluten free without expecting someone else to be able to do it for you. :)

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dilettantesteph Collaborator
dilettantesteph
Posted

I find that it really helps to control gluten intake where I can.  That way if I get some accidental gluten from elsewhere, it doesn't bother me as much.  I have a little bit of wiggle room.  Also, once you are well healed, you don't experience symptoms as easily.  I am not less sensitive at all, unfortunately, but it takes awhile to get re damaged enough to notice it.  I can take a hit from airborne gluten at the farmer's market, for example, and still go on with my life.  It just takes while to figure out your individual level of sensitivity and how to manage it.  There are a lot of ups and downs along the way, but you can get there.

 

I actually don't carry food around with me unless I am going on an overnight trip.  I just don't eat when I'm out.  I'll eat before I go or when I get back.  That's easier and safer for me.

julissa Explorer
julissa
Posted

after I went gluten free I felt worlds better, but not fully. I was still nauseous and had terrible heartburn at times. I suspected dairy and soy. I tried an elimination diet for those one thing at a time. I then went to an allergist and found out I am allergic to both. so now, knowing that, I am gluten, dairy and soy free, and feel pretty darn great!

 

as far as the other issue, I know how hard that is. just carry your own food if you are going to social situations. it's hard around kids when they are eating. my grandkids always want to hand me their gluteny food with their precious gluteny fingers.

  • 2 weeks later...
Deaminated Marcus Apprentice
Deaminated Marcus
Posted

Hello Jamie,

 

I felt better after going gluten free but in the following year my fibromyalgia pain returned.

I discovered it was the red kidney beans and later other foods.

Later, I did that expensive food intolerance test and I'm glad I did it because it pointed out other problem foods like peas which I never would have suspected.

But if you don't want to take this test, I recommend cutting out dairy, eggs, oats, and even all beans and peas.

Then reintroduce them one at a time once you feel better.

 

I understand about those dinners.

I wasn't invited to dinner parties after I went gluten free even though I could have eaten the vegetables and meat.

Also no one believed me, because I wasn't skinny.

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    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

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    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
    • trents
      Accuracy of testing concerns

      By trents · Posted

      The biopsy looks for damage to the mucosal lining of the small bowel from the inflammation caused by celiac disease when gluten is ingested. Once you remove gluten from the diet, inflammation subsides and the mucosal lining begins to heal. 
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