Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Symptoms, Symptoms, Symptoms! Help!
0

6 posts in this topic

Hey everyone!

Sorry I'm new to everything here so I'm looking for some advice for you more seasoned pros.

About 10 months ago I went to the Dominican on a service trip and ended up getting a severe stomach flu or cholera. Since then, I haven't felt normal. Symptoms started with stomach churning and bloating all the time, most often at night or after I ate. It kind of feels like when you drink a lot of water and you can feel it sloshing around-- but it happens to me all the time. It also is SUPER loud. I also was experiencing constipation. So I went to gastroenterology and they did a whole bunch of blood tests (including celiac) and all came back negative and normal. Then I got an endoscopy-- also normal. They told me I had post-infectious IBS, and that I just had to wait it out.

So after months of waiting and still feeling sick I went back to the doctor. We did more tests (thyroid, food allergy) and all came back normal. My constipation had gotten worse at this point and I was still experience the churning/bloating all the time. Again they told me to wait.

After 10 months I decided to get a second opinion. The doctor mentioned gluten sensitivity but said the topic was very controversial and there was no way to test for it. He also explained that my chronic headaches (since I was 14) and skin eczema (specifically on my scalp) could also be symptoms of gluten sensitivity. Unfortunately he said he didn't know enough about the subject to tell me any more.

So after doing my own research I decided to try going gluten free on my own. The first two days I felt pretty good, the churning eased off a bit and my bathroom experiences weren't so bad. Day four however hit me hard. The churning was so bad it made me nauseous and I was so tired I couldn't do anything all day. Day 5 started with significant stomach churning/bloating, more constipation, and a migraine.

I'm starting to question my self diagnosis. Am I way off track here? Is it possible I'm not gluten sensitive at all? The day I started to feel sick I had a starbucks raspberry latte and some movie theater popcorn (as well as some stuff I cooked myself). Is it possible that one of those things had gluten in it and it's affecting me this severely?

Sorry for the long post, I'm just frustrated and looking for some answers. I'm new to this and I'm worried I'm doing it all wrong or I'm wrong in my diagnosis in the first place.

Any similar experiences or help would be very VERY much appreciated.

Sheri

0

Share this post


Link to post
Share on other sites


Ads by Google:

Im betting you got glutened. I have been glutened more times than I can count at Starbucks so I quit going. I thought I read on another post that movie theater popcorn wasnt safe but Im not sure. It also tales time to jave symptoms resolve.

0

Share this post


Link to post
Share on other sites

Your best bet in going gluten free is to eat only food you have prepared yourself. Eat whole foods, meats, fish, vegetables, fruits, nuts, seeds, rice, maybe some gluten free pasta with home-made sauce so you know what's in it. The chances of cross-contamination before you are thoroughly familiar with the diet are very high. So at least one month of not going out to eat, taking snacks with you to the movies (you don't have to advertise it!) and not eating at friends' houses unless it is something you have brought with you.

Yes, after you go gluten free it takes smaller and smaller amounts of gluten to upset you. Unfortunate but true; your body is so glad to be rid of it that it fights back if it detects it again.

Non-celiac gluten intolerance is actually more prevalent than celiac disease and the medical community is just coming to grips with this. Keep eating gluten free and learning where gluten hides. Here's to feeling better in no time. :)

0

Share this post


Link to post
Share on other sites

You do sound like you got glutened. I have had daily headaches like you, as well as the migraines. I had DH on my feet but the gastro didn't get to see them because I went gluten-free before going to him. I had eczema a bit on my head and my elbows were in horrible shape...sharp, rough skin. I was opposite in that I had D all the time, not C. But the rest sounds almost like my story.

Anyway, 2 days into gluten-free and I felt great. I wasn't healed, but I had just not felt that well in a long time so to me it was euphoric. After 4 days my skin cleared and my elbows were soft. Who has ever gone from nasty, rough skin, including rough heels and callouses, to soft skin in 4 days without heavy topical and other treatment? I sure did. All I did was I went gluten-free and started supplementing. That's it. And I got glutened at 5 weeks and it was horrible, just like yours.

If you're just intolerant, that's a bit of a blessing. You're suffering symptoms without having the severity of damage to the intestine. Sounds like it feels the same, but I imagine your blood work should look a lot better than if you had celiac. So if you can stay gluten-free that's the only real test for it. If you feel better gluten-free, the answer is easy. And it seems like it already had until something happened. I wouldn't trust things without either a certification from the establishment that it's gluten-free (and that can still be questionable due to CC) or a label you can clearly identify all ingredients as safe (as well as any mfg process that food went through). It'll get easier as you learn all the "gotcha" things that can trip you up. I'm still tripping regularly :)

0

Share this post


Link to post
Share on other sites

Just a thought -- have you been tested for amebiasis? I traveled a lot to Mexico in the past and found it very difficult to get properly tested and treated in the US for tropical parasites. Not unlike Celiac, doctors here have very little experience with it.

Once when I had a very bad case of amebic dysentery, the first round of Flagyl did nothing and it took almost a year of treatment to get rid of it.

0

Share this post


Link to post
Share on other sites




Thanks for all the help! I will continue to be gluten free and hopefully it'll get easier. I feel a little better today so maybe im starting to get over the starbucks mishap. I haven't been tested for amebiasis I don't think. I have an appointment with a gastroenterologist coming up so I will mention it to him. I took anti-parasitics after I got back from the Dominican though. Would they be strong enough to kill amebiasis?

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      103,653
    • Total Posts
      918,480
  • Topics

  • Posts

    • Newly diagnosed and totally overwhelmed
      Hi!  I know I'll never forget the day I was told after an endo- and colonoscopy that I indeed had celiac disease.  I immediately went to a Trader Joe's grocery store and bought some gluten-free things to eat. about a month later I had a Total meltdown in my car outside a grocery store---feeling So Sorry for myself!   I cried and said I'll Never to able to eat what I want to again! that was 10 years ago and gluten-free foods have come a long way.... I love having a gluten-free everything bagel and delicious gluten-free 'Oreo cookies'----neither of which there were 10years ago. Everyone who has responded so far have Great Tips!  The best news is that your Diet will cure you!  I do not know of any other condition where this is true!! BTW---some of your friends and family Will understand and will make sure you aren't hung out to dry foodwise........and others just won't/can't understand and will think that just avoiding bread is enough..... Be kind, but don't risk your health to be nice to someone who forgot or doesn't understand. keep reading!  Keep trying different gluten-free foods to find what you like!   Best wishes!!  
    • Milling vs buying gluten-free flour
      It has never even been turned on. As I recall, it is capable of milling oats as well as popcorn. I don't know about coconut or other nuts but I can find out.
    • Milling vs buying gluten-free flour
      The very first question is.... Was that Retsel grain mill used for gluten before your diagnosis? If the answer is yes then the 2nd question is can it be COMPLETELY DISASSEMBLED and cleaned in every single nook & cranny? If the answer to that is no, then you can't use that grain mill because you will be continually cross contaminating yourself.  3rd question: Will that mill do things like coconut? The grains that are oily. Some mills won't. Better check that out. I got a NutriMill & it can not do oily grains or things like coconut. No oats as they're oily, same for nuts. Rice flour it does a great job on & gets it as fine as I can buy it.
    • Food tolerance issues post-diagnosis
      Boy, you've sure had a rough time of it! My heart goes out to you! I love your positive attitude about coping until your villi heal more. THAT is your greatest ally in this journey. Okay, now to your problems...... Your gut is still damaged. You aren't healed yet - you know that as you've stated it. It can be really wonky for the first 6 months to a year. It's like being on a roller coaster ride & you can have good days & sucko days & good weeks & weeks that are the absolute pits. My advice would be to ditch all the processed gluten free foods. You'll heal faster & have less problems eating "whole foods" --- fresh or frozen fruits & veggies, meats & dairy as long as you can tolerate it. Forget the corn flakes & rice krispies. They may be gluten free but it's still processed food & therefore full of all kinds of chemicals & preservatives & stuff you don't need. We always tell people to spend at least the 1st 6 months avoiding the processed foods. Time enough to get into those after you heal right? How about for breakfast you have a couple eggs, either fried or pan scrambled. Some fruit -- bananas, pears, whatever floats your boat, a glass of milk, some yogurt. You may need to have well cooked foods for a while & that means mushy veggies as well as fruit. From the sound of the extent of damage you had I would say that's where you ought to be at this point. You don't want to make things any harder on your gut than necessary for the time being. You do have one great big thing in your favor & that's your age. You're young & will by all rights heal up much faster than us old geezers who weren't diagnosed until our 50's, 60's & 70's after a lifetime of damage. Please read our Newbie 101 & follow the links contained within the threads. This will give you a ton of valuable information. Just click on it:  
    • Biopsy confirmed?
      Okay, this makes more sense now. Was the celiac test in 2014 part of the checking to find out what was wrong with you which resulted in the Barrets dx?  NO, a colonoscopy will not diagnose celiac disease at all. The biopsies for celiac disease are taken in the small intestine not the colon. You need to get your records, both past & present. If you could post them here then we'd have a much better idea of what's going on and be more able to tell you what you might be looking at. When we say you might not have been given the right celiac blood panel, we mean the FULL, CURRENT panel and not just a primary screening. The screening is good but it does miss celiacs. We have members who tested negative on all but the DgP portions so when one has a situation like yours, you need to cover all the bases & have the complete panel done. Here it is: Anti-Gliadin (AGA) IgA
      Anti-Gliadin (AGA) IgG
      Anti-Endomysial (EMA) IgA
      Anti-Tissue Transglutaminase (tTG) IgA
      Deamidated Gliadin Peptide (DGP) IgA and IgG
      Total Serum IgA   
      Also can be termed this way: Endomysial Antibody IgA
      Tissue Transglutaminase IgA 
      GLIADIN IgG
      GLIADIN IgA
      Total Serum IgA 
      Deamidated Gliadin Peptide (DGP) IgA and IgG   If you post your results on the blood work make sure to post the reference ranges listed because different labs have different ranges. It would be imperative to know if the doc took biopsies for celiac when he was doing the endoscopy. How many & where exactly from? Some docs just rely on visual & that's not good enough to dx celiac disease. Biopsies are the only way.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • celiac sharon  »  cyclinglady

      Hello cycling lady, have you noticed my picture is showing up as you?  Have no idea why but it's rather disconcerting to see my picture and your words 😉  Do you know how to fix it?  You seem to have far more experience with this board than I do
      · 1 reply
    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,745
    • Most Online
      1,763

    Newest Member
    komac
    Joined