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Guest Nukapai

By Guest Nukapai
in Celiac Disease Pre-Diagnosis, Testing & Symptoms

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celiac3270 Collaborator
celiac3270
Posted

After vomiting, it's impossible to get the taste out of your mouth by brushing -- you still taste it in your throat. Usually I would drink a softdrink like Sunkist to wash the taste away, but I'm trying to avoid the sugar/carbonation combination, so I tried an altoid (gluten-free)........it happened to be the peppermint kind and it actually helped a little with the stomach......so, peppermint does help -- even when it's not in a tea, but in a small pill-sized altoid.

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jendenise Rookie
jendenise
Posted

Sorry for all the problems you are dealing with right now. I had almost all the same problems from childhood on. I was even getting IV's of iron 3 times a week because I was so anemic. Once diagnosed though I learned that gluten isn't my only enemy. Steer clear of oats, barley, anything malted (lots of rice things are), caramel color and Red 40. I know it sounds daunting, but I'm healthy now. I go in for my 1st check up in 2 years tonight so I guess I'll find out if my diet has paid off. As far as the pain goes try benadryl one that makes you drowsy, the sleeping makes it more bearable. Go to an Asian market or a natural foods store and find rice noodles. They're easier to cook than spaghetti, taste good w/ butter or a sauce if you can find one that is gluten-free and they taste good without making you sick. Also, applesauce is good. Steer clear of ordering out or a lot of microwaveable foods until you get your results. Good Luck and remember this is nothing compared to a lot of other things you could have. Atleast we can still have sugar!

Guest Nukapai
Guest Nukapai
Posted

That's so sweet, jendenise :)

I have to just hang in there, going to see the doctor and discuss blood test results/next steps on Monday.

I still get sick when I try to eat more than a couple of handfuls of food at a time and even stuff that doesn't make my stomach burn still kind of comes out as diarrhea. EW.

I am frightened that there will just be no diagnosis and I get told "oh, it's just your nerves" or "IBS" because that will NOT help.

Private medical care might be the only option, but I will persevere with the NHS for now. See what the doc says on Monday.

jendenise Rookie
jendenise
Posted

Well, I doubt if it's nerves, but it could very well be IBS or if it is celiac disease maybe you'rre accidentally eating things that are still bothering you. It takes a few months for the lining of your stomach to heal maybe milk/dairy is harming you too or acidic foods. Try starchy foods like baked potatoes, or white rice (with or without sugar or preserves) and maybe try to drink rice milk for a while the vanilla flavor isn't too bad for short term. Good luck though, I wish you the best, let me know how it turns out!

coin-op Newbie
coin-op
Posted

to respond to the original post - your diet is out of control. Look at the safe and forbidden lists on this site for the basics of the gluten-free diet. READ INGREDIENTS. if you keep abusing your body, you will become critically ill, and that's no joke.

-cass

Guest ~wAvE WeT sAnD~
Guest ~wAvE WeT sAnD~
Posted

To Coin-Op: Oh, and I just wanted to add, from the diary post, a website called "milksucks.com" does NOT sound like a credible source.

jerickson Newbie
jerickson
Posted

Does anybody have any good ideas for lunches to bring to work? I've been bringing cottage cheese with pears/peaches, rice cakes with peanut butter, but I'm looking for some new ideas to break up the monotony. Any suggestions?

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jendenise Rookie
jendenise
Posted

Do you have a microwave? If so go to Amys.com they hace gluten-free foods that taste really good. But not all of them are so make sure you double check before purchasing. Also, if you like tuna mix some up in a bowl with whatever you like in it (for me it's mayo pickles & onions) and take a little salad, use the tuna as your dressing, or take tuna w/ rice crackers. Egg salad w/ rice flour bread or tapioca flour bread is good too! Good Luck

tarnalberry Community Regular
tarnalberry
Posted

I had leftovers for lunch last week, so it was chicken cacciatore, bean salad, and chili salmon stir-fry. And veggies, of course. :-) And soy yogurt (I'm dairy free).

You might try sitting down one weekend and brainstorming ideas... I found that really helped remind me of all the things I could take for lunch.

Guest Nukapai
Guest Nukapai
Posted

Well, I've had two out of three blood tests back. The two that came back were for acute infections/stomach bugs. Those were clear.

I've now lost 20.8 pounds (or 10kg) in five weeks.

Went to doc's today, he looked really worried, examined me thoroughly weighed me (and said, helpfully: well look at it positively, if you had started at 7 stone you'd be in hospital by now and you're still overweight so you are going to be okay for a while, gee, thanks) ...and I am now being tested for gall stones, liver problems, bacterial overgrowth and something else. Next blood test booked for a week from now. He is also sending me for an ultrasound.

The celiac test results hadn't come back yet. Got to wait for a couple more weeks for those. :blink:

  • 4 months later...
Guest Nukapai
Guest Nukapai
Posted

Update: still ill, in fact, kept getting worse until about three weeks ago I had to be taken to A & E in an ambulance because I developed a really bad flare-up of whatever it is I have wrong with me. I have lost a total of 18kg (or just over 40 pounds) now in weight since I got sick. And it's still dropping.

I now have a GI consultant at the local hospital and my endoscopy/colonoscopy are due to be performed on the same day, 23rd of March. So still a while to wait.

I feel sore and horrible and tired.... and have had enough, really. But somehow I've got to hang in there.

Now the interesting thing is, that I had an Enterolab gene test done in the meantime and they said I do NOT have the gene for Celiac, but I DO have the gene for gluten intolerance! I don't know whether this makes me someone who falls into that weird category of having gluten intolerance, but no Celiac.

The consultant at the hospital is looking for Celiac too - but his main suspicion is actually Chrohn's disease. :huh:

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      IBS-D vs Celiac

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      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a coincidence, but the brain fog is back and I feel very tired.   
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    • Jane02
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    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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