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2 Years Later And Still Dealing With Major Symptoms...
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31 posts in this topic

Two years in and I feel like I am still in transition.  I had to make many changes.  I cut out many foods that I didn't tolerate.  I am currently doing the Specific Carbohydrate Diet.  That is grain free.  I picked up some new foods.  I am contacting food producers before I buy.  Don't give up.  It can be very complicated, but there is hope.

 

Dee

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Blood tests came back showing that I do, in fact, adhere to a very strict gluten-free diet (which I knew)...doctor did some biopsies from the endo/colonoscopy, but said it's obvious that being gluten-free is not healing anything internally. 

 

In response to some of the above posts, I have tried Align, but got no relief :/  I've definitely considered going to a naturopathic doctor, and depending on what my biopsies show, that might be the route I take.  All my vitamin levels have always come back ok, which surprises me considering food literally goes through me like water.  Definitely not lactose intolerant, gave that up for 6 months and slowly reintroduced with no reaction.  Could it be a fructan issue?  Maybe.  Before being diagnosed with celiac I had looked heavily into the FODMAP diet, might be something I go back to.  Hopefully I'll have more results in a few days, and can start to move forward!

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Hi luvrdeo,

I'm glad to hear your blood test came back fine, but sorry to hear your endoscopy didn't turn out as well.

I just wanted to mention that I tried the low FODMAP diet for a couple of weeks after my GI Dr. suggested it and it really helped my system to calm down. I think my symptoms are different from yours, but I was struggling to feel better and it made a difference for me. I would guess that you would know if it helps you within a couple of weeks on the diet. I really hope you feel better soon.

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Hi luvrdeo,

I'm glad to hear your blood test came back fine, but sorry to hear your endoscopy didn't turn out as well.

I just wanted to mention that I tried the low FODMAP diet for a couple of weeks after my GI Dr. suggested it and it really helped my system to calm down. I think my symptoms are different from yours, but I was struggling to feel better and it made a difference for me. I would guess that you would know if it helps you within a couple of weeks on the diet. I really hope you feel better soon.

Going to the store today with a list of foods that are FODMAP safe - minor changes (have to swap some fruits and veggies) since I am paleo anyway - but it's worth a shot.  I'm beyond anxious to get my biopsies back, simply because I don't like what I read about the damage that is still happening inside.  It's flat out scary!  I'm pretty sure I'll end up back on steroids and immunosuppressants, that's always fun!

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Looks like it's just the colitis giving me hell...non-stop - and no matter what I eat it makes me sick.  They want me on steroids again, and I said no - didn't work the first time, and that was an awful experience.  So then they suggested Uceris, which I just got done with 60 days of...it helped some when I was on it, but the day I stopped everything fell apart again.  This has to be the most frustrating thing ever!  Sorry, needed to vent...

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Looks like it's just the colitis giving me hell...non-stop - and no matter what I eat it makes me sick.  They want me on steroids again, and I said no - didn't work the first time, and that was an awful experience.  So then they suggested Uceris, which I just got done with 60 days of...it helped some when I was on it, but the day I stopped everything fell apart again.  This has to be the most frustrating thing ever!  Sorry, needed to vent...

Sorry to hear this. I sure do hope your colitis calms down soon. I mostly have "C" and I feel so bad for people with "D". Yours sounds like a really bad case of it that has lasted a very long time. Hope you feel better soon.

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    • Hi Beachgrl, It won't hurt anything to go gluten-free now, except the possibility of getting a diagnosis of celiac disease.  When i went gluten-free, it seemed like the initial changes were spread over about 6 weeks.  I had gut spasms for that time.  And other changes, all for the better.  Initial recovery from celiac damage can take up to 18 months, so it can be a slow thing.  Some people get better much faster of course, because we are all individuals and not identical. Going gluten-free for celiac disease is a lifetime commitment though, and some people have a hard time doing that without a diagnosis.  Even minor amounts of gluten can cause us to react, so it is best to eat a very simple diet of whole foods at first.  Avoid dairy and processed foods.  I hope it works out for you.  I know some people with Crohns disease eat gluten-free and find it helps them.  Gluten is a tough thing to digest for all people, but most don't have an immune reaction to it like celiacs do.  
    • Honestly, I would not trust the school to provide a gluten-free meal except for fruit, salads, veggies, etc. I sub in a school cafeteria and I swear everything is breaded or on bread. Utensils are shared. They're very clean but unless you have a very knowledgeable person in there, I just wouldn't chance it. I found a slim Jim type snack that says gluten-free on it. If you want to give me your email or FB account, I can send you some very valuable info on 504's though. They carry the student right through college. I kept a copy of what a friend wrote about her daughter being in a sorority and just how the 504 helped immensely. But, I would definitely get one and still be prepared to pack a lunch. All our meals are delivered frozen and we just hear them up. If your school actually fixes food, that's different. 
    • Oh, I would suggest providing gluten-free goodies (e.g. Candy) or even a frozen cupcake (kept in the teacher's freezer) in the event of a party.  My daughter's classmate is severely allergic to peanuts.  Her mom did that and Abby was never left out!  😊
    • Hi Nobody, Welcome to the forum!  I noticed you said you have been avoiding wheat products.  That's good, but are you avoiding rye and barley also?  Wheat, rye, and barley are the 3 grains that cause reactions in celiac patients.  About 10% also react to oats. If you haven't had the full celiac antibodies test panel, it might be worthwhile getting that done now.  The ttg is just a basic test and is generally followed up by an endoscopy or the full celiac panel. I wouldn't worry a lot about getting cancer.  That doesn't happen often. It is possible some of the other grains you might be eating are contaminated.  A group did a test on several off the shelf products a few years ago that would not normally be thought of as having gluten and found some actually did have low levels of gluten.  Things like corn meal for example.    
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