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Feeling Overwhelmed
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I recently had a positive blood test result and I am awaiting my biopsy results. I have spent the last month cursing my GI doctor for making me wait a month for an endoscopy. He wanted me to have a colonoscopy first then the endoscopy. Part of the problem was that I have never eaten a lot of gluten, maybe three pieces of bread a week or less, so my first blood test came back a weak positive 25 on the Gliadian AB IGA test. Then I had the colonoscopy and another blood test, this time the Gliadian AB IGA test came back a strong positive +41 but the other three tests came back negative. I ate one piece of bread a day. Anyhow, my symptoms have gotten worse everyday, at first it was bloating and a lot of gas, and then constipation interrupted by diarrhea, then diarrhea all day and at night. I have had lower body aches, congestion, dizziness, and lots of hunger, slight vomiting, stomach ach, and fatigue. These symptoms seemed worse when I had lamb or other red meats. Originally I went to my doctor because I was having constipation and sudden diarrhea attacks (running to the bathroom events).

It seems to me that I have a gluten intolerance and maybe celiac disease. In any case I pretty much have decided that I am giving up gluten. I have few questions, first I am worried that maybe I may have some other problem and second, I went today to Whole Foods and although I found gluten free foods, I had hard time finding things I liked. I am also lactose intolerant (self diagnosed) and after reading some of the posts I am wondering if I should get a milk allergy test. Another question I have is that I noticed that labeling is not consistent. Since my biopsy I have stopped eating gluten I feel slightly better. Feeling overwhelmed.

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Sounds like gluten is an issue for you.

I had the same problem as you at first. There was a lot of crappy tasting gluten free stuff and I was like o great I am going to have to eat this my whole life.

After a while, you will learn there are alot of good gluten free brands that are good it is just a matter of finding them. This site will definitely help you out on things to try.

Here are a few great tasting gluten free foods:

-Tinkyada pasta is loved by an overwhelming majority of people. It tastes normal

-Wellshire Farms Chicken Bites-fully breaded and taste like normal ones if you ask me

-Foods By George cinnamon english muffins

-Cybros rice rolls

-Kinnikinnick donuts/breads

Believe it or not we can also have alot of mainstream brands of food still. There is a list of brands that will list wheat,rye,barley,oats on the label or they will be safe-they do not hide anything even under otherwise questionable ingredients. This saves us a lot of time since alot of ingredients can hide gluten.

Also, the list of safe and forbidden ingredients and foods would help you. Here is the link if you do not have it. http://www.celiac.com/st_main.html?p_catid=12

Feel free to email me if you need any help... I am sure this site will give you tons of info. People on here are so supportive and knowledgable. It definitely gets easier as you go and it will become a normal way of life.

Also, a biopsy can rule celiac in but can not rule it out. The doctor could miss damage if it is sporadic or there may be no damage yet if its in beginning stages. So you may still have it even if the biopsy shows negative.

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Thank you for all your advice. I think I was having a little breakdown. I will use all your information.

:D

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It seems to me that I have a gluten intolerance and maybe celiac disease. In any case I pretty much have decided that I am giving up gluten. I have few questions, first I am worried that maybe I may have some other problem and second, I went today to Whole Foods and although I found gluten free foods, I had hard time finding things I liked. I am also lactose intolerant (self diagnosed) and after reading some of the posts I am wondering if I should get a milk allergy test. Another question I have is that I noticed that labeling is not consistent. Since my biopsy I have stopped eating gluten I feel slightly better. Feeling overwhelmed.

<{POST_SNAPBACK}>

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    • Well, I have never cruised on Carnival, but I am sure they can accommodate you.  I assume that you have already alerted them that you require gluten free meals.  If not, please contact Carnival immediately. Here are my own tips.  Some folks eat off the buffet line, but not me or hubby except for coffee/drinks and baked potatoes (jacketed) and fruit that we wash in the restroom (people touch everything!)  Okay, I am OCD, but my last glutening which occurred the previous summer made me sick for three months (GI tested my antibodies to prove it).   When we board, I go to the buffet restaurant ASAP and ask to speak to the Head Waiter (they are usually there greeting customers and often trying to up sell to specialty restaurants.   Let them know you have celiac disease and must be gluten free.  They may try to tell you that each dish is clearly marked gluten free, but really?  Who's to say that some other passenger is not going to switch spoons (or I have seen passengers wandering around with serving spoons...I kid you not!  The staff usually will  go downstairs and fetch a gluten free meal for me from the main dining room's kitchen as there is usually a dedicated area for allergies.  We have to wait up to 20 minutes or so but it is worth it.  Starving?  Get a baked potato wrapped in foil until your gluten-free meal arrives.  Now, do not do this every single time.  Those folks have to go down several levels to fetch food and you don't want to be a pain.  But if the main dining area is closed, they need to make an effort to keep you safe.  On our last cruise, we were advised not to eat anywhere but the main dining room and that included room service (they are not trained to handled allergies).  My headwaiters have sent goodies (prepackaged gluten free rolls and cookies for us to keep in our room.  We can always grab whole fruit (I wash it first) to snack on.  I bring gluten-free non-perishable items with me to eat while at port in case we can't find anything (which can be often).  Again, when we get back to our ship, we contact our headwaiter and he/she can prepare some snacks until we have dinner.   Be grateful and not picky.   We eat all meals in the dining room (or at least as much as possible).  Our headwaiter had a few other celiacs on our cruise this summer, so they prepared some gluten-free waffles, etc. for our breakfast!  What a treat!  At breakfast, we'd have different waiters, so our headwaiter would always instruct our waiters each and every time!  They even let me tour the kitchen and showed me the allergy section.   The only time I did not feel safe was at the buffet.  We once ordered gluten-free pizza and I realized (I watched) that that restaurant didn't really have the gluten-free thing down), do I called him on it.  Got the manager etc.  So, be careful.  Other cruises made us frozen Udi"s which was just fine with us.  They covered it up in foil so that we would not get any cross contamination from their pizza oven. So, have fun!   Tipping?  We prepaid our gratuities, but we gave our headwaiter an extra $200.00 for his time.  For us, it was well worth the service and safety of our food.  It does not hurt to slip some of the tip ahead of time (like after your first meal!)  
    • <strong>Celiac Disease & Gluten-free Diet Information at Celiac.com. Gluten Free Diabetes ::The 3 Step Trick that Reverses Diabetes Permanently in ... View the full article
    • I had a biopsy done (2 samples, 1 on a lesion and 1 next to lesions), and also more bloodwork done. All came back negative. However, I only had been eating gluten for 2 weeks prior, and it took a week of gluten for lesions to reappear. I also used a topical steroid off and on (1x a week approximately) for a month or so before testing. The dermatologist told me to stay off gluten though, and said she wants to do more allergy testing (her next open testing appt is in 6 months!!). I know I'm not the DR, but I dont think it's allergies...without a doubt, my skin begins clearing about 2 weeks post gluten-free diet...this is without changing anything else in my lifestyle. And when i had to go back on gluten before my biopsy, it took about a week, but did reappear. Now, about 2 weeks post biopsy and gluten-free, it had begun clearing until i worked outside all day in heat, humidity,  sweat etc and it has definitely irritated all the places that were healing (not new breakouts, just aggravating what was going away!). All that being said, i have a friend who is an MD( who's hobby is to attend conferences on skin conditions!), and she has told me that without a doubt, I have celiac/DH.  I think I just feel like I need test results and paperwork to show for it...especially to show family members who are unsupportive (gross understatement!) of the extreme changes I've had to make!
    • Sorry ! I have never cruised before.  Just wanting to follow your topic.  Good luck! Have a great,  safe vacation.  
    • Hi there, I hope you're all having a good day! I'll be heading on a week-long Carnival cruise shortly and had a few questions: -What is the tipping protocol? I've prepaid gratuities, but feel like the food request will warrant something extra. Should I tip the headwaiter? Hostess? Regular waiter? Chef? Those cooking at, say, the sandwich or pasta bars? If so, how much is appropriate, and should I tip at the beginning of the cruise, the end, or split it up? -It looks like the main dining room will be closed during lunch hours on most days. Any recommendations on safe bets for midday meals? I'll be on the Carnival Sunshine, for what that's worth. Thank you so much for any information you can share!  
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