OptimisticMom42

Ugh. I don't even know if this is the right site to post on but after reading around a bit it seems that many members have, at one time, not known what was wrong with them but knew something wasn't right.

I am 27 years old and have been healthy almost all of my life, aside from a tendency to get frequent UTIs.

In mid-December I got sick. It was sudden, like a virus or food poisoning. I was driving and got severe and sudden stomach pains. I pulled over to use a restroom and ended up having diarrhea for the rest of the night. I did a bland diet for a day or two and then starting feeling a bit better. 5 or 6 days later (after not having a BM at all) I got mild diarrhea again. Saw my primary MD the next week and he said I had infectious colitis. Stay away from dairy & fatty foods and should be back to normal in a couple of weeks.

Fast forward to now. Almost 6 months later and I am still sick. And miserable. I have stomach pains from the time I open my eyes in the morning until the time I go to bed at night. In the morning, it's more rolling, bubbly gas pains. Then it just starts to feel crampy and bad. I have frequent constant pain in the upper middle part of my abdomen. And I almost always feel a pressure in my bottom, like I could have to go any minute. I haven't noticed any pattern of better or worse with foods. I go 3 or 4 days without having a BM and then a day where I go several times and each time is less solid and less "normal." Then another 3 or 4 days where I'm unable to go.

Around the 3 month mark, I decided enough was enough and made an appt with a Gastro. He's done blood work and a colonoscopy. I brought up celiac disease after reading about it online and how it can come on suddenly after an illness. On the lab sheet he ordered a Celiac Disease Panel. He said he was sure I had post-infectious IBS.

I don't know what the actual results were but I got a phone call from a nurse saying "you don't have celiac disease." I had 2 hyperplastic polyps removed during the colonoscopy and he said the rest of the colon looked good, with no signs of Chrohn's or colitis.

So, here I sit with a dx of post-infectious IBS and a rx for Librax. I was taking it 2x/day after the colonoscopy and started feeling better than I was. Then I got a sinus infection and took antibiotics and I started feeling worse than ever. Now I'm taking the Librax 4x/day and still not feeling great. I've also been taking a probiotic daily since just after this started.

I know that abx can wreak havoc on your gut but I've had to have them many times in my life and never experienced any GI side effects.

I was considering ordering the Enterolab stool test just because I don't know what else to do. The doctor's plan is to see him after 4 weeks of the increased Librax and start weaning back down. He seems content to just let me have the IBS dx.

What can be making me feel like this for so long? Why was I fine one day and the next I wasn't?

Any advice you can give me is much appreciated. I just don't know what else to try or what else to ask for from my doctor. I'm just tired of feeling sick or uncomfortable or in pain and not wanting to do anything or leave my house.

Spartan store brand canned fruit and veggies, they keep costs down by limiting the number of ingredients. When I'm to sick to think and cook, I eat them cold from the can.

You don't have to do more testing at all if you don't want to. A positive response to a gluten free diet is all that you need. There are four gluten-free's in our household. All four were dx'd by different methods. All confirmed the dx by going gluten free and then having an accidental glutening that convinced them never to do that again.

Hope this helps, RA

Hi I have a 7yr. old who was diagonsed with Celiacs Disease 5yrs. ago. She has sever Seperation Anxiety and I was wondering if anybody else suffers from anxiety? I was wondering, I know they don't obsorbe certain nutrients due to the Gluten free diet. Does anybody else have a problem like this?

Thank you

The gluten free diet doesn't impede absorption. Before going gluten free, gluten causes damage to the intestines. The damage impedes absorption. Within the first year of being completely gluten free the damage should heal and allow normal absorption. A lot of moms use a gluten free children's multi-vitamin to make sure the kids are getting everything they need.

A lot of us have anxiety when we get glutened. Could your daughter be ingesting something that is not safe? Also, think hard about your own behavior. Is your child mirroring the concern she has seen you display? I would have seperation anxiety if I was asked to leave my gluten-free child at a day care. Hope this helps RA

Ha it was the horrible smelling gas that convinced my family that this was real!

Give up the dairy, soy, nuts, beans for a bit and take acidophilus.

Forrest Gump: Stupid is as stupid does.

Just smile and walk away!

They admit on the site that there is no kellogs cereal that is truely gluten free.

This is one of my pet peeves as Kellogs is a Michigan company and I like the idea of buying local products to cut down on transportation costs. And if you research them a bit you will find that Kellogs makes a much better quality product to sell in Europe than they make to sell in the U.S.

Hi Everyone,

I tried dairy again, cream cheese this time as I wanted to test myself for lactose response. My response was mild so woohoo I'm healing! I'll probably continue to use subs as much as possible for now and just not be so freaked out by the possibility of dairy additives.

My question is...... how do you decide if a response is tolerable? It drives me nuts when my Mom says, "Oh I can have a little as long as I'm home in 20 minutes." But now that my response is just gas instead of make-ya-wanna-die-arrehea I'm beginning to see her point.

Are there other things I should be considering like maybe an increased risk of developing arthritis?

Thanks for answering my question, RA

For me the pain is about a 4 until it shoots down my left leg, then it's higher. It can take up to three days (with miralax) to a week to get my system cleaned out and working again. Then my stomach feel like I've been doing sit ups.

I ate a dill pickle and a handfull of walnuts and swelled to about the 7 month size. Started forcing down the cherry juice/maple syrup/miralax tonic as soon as the itching started and today I'm tired but things are moving again. Not sure if it was the pickle or if the walnuts were CC'd. Anyhow my tummy will be flat again in about a week Hate it when this happens.

I still break out if I have soy or dairy especially deep ones on my neck that leave dark marks for a long time.

I've been glutened from pouring the dog food into the gravity feeder. Once from vacuuming up particles. Once from sitting next to a lady eating crackers. You know how sometimes a smell is so strong you can taste it, that's because you are tasting it and ingesting it. It's not just what she eats. It's what others eat around her.

Anyone out there have a recipe for a protein shake that would be gluten/dairy/soy free?

I'm thinking of ordering egg white powder and coconut milk powder from Barry Farms. I want something shelf stable so I can keep it in my locker at work and just add water and maybe some fruit. I'd like to keep it low carb as I sometimes have issues with low blood sugar and yeast. I have tried truvia and didn't have an obvious reaction.

Thanks for helping me out on this and if it works you should all just sell your Wendy's stock as I'll cut my chili runs down to about once a week!

OK then I guess I'm on my own. I'll let ya'll know how it turns out. RA

If your relatives admit that you have celiac. They have to consider that they may also have it. If you're wrong then they are safe and can keep eating junk.

My doctor wrote my diagnosis on a sheet from his prescription pad. I carry it in my purse and have whipped it out on a couple of co-workers and said in my most diva like voice, "Well, my doctor doesn't agree with you!" toss of the hair, show them my back, get a drink of water and sit right down! Never leave the room while they feel like talking behind your back

My boss has Lupus and says she would rather die than eat like me. She would rather pay for pills than give up cheap cookies. So we don't discuss it. She has her pop tarts and ramen noodles and I have my eggs and fruit and Wendy's chili.

You'll figure out the best way for you to handle it. RA

HEheeheeha oh my, first thing I did today was try to figure out how to get rid of the warn status thingy. Sometimes I'm a cranky poster, mostly when glutened.

Wendy's chili is gluten free, Uno's Chicago Style pizza place has a gluten free menu

Did you have a good protein source (one with more grams of protein than carbs) with your breakfast? It could be low blood sugar.

My sister is a feely person. She reads the obituaries and cries even if she doesn't know anyone listed. She throws parties and everyone comes.

I'm a flatliner. I care, I'd just rather not deal with it. It all just makes me feel tired and overwhelmed. So maybe when I stop glutenizing myself by accident life will be more fun.

I use the liquid. I started taking it because I was bone aching cold when everyone else was fine. It started working within a couple of days. It's nice to not have to wear long johns under my turtleneck under my sweater under my fleece jacket under my winter coat!

I could follow your mother's logic if we were talking about down syndrome, cancer, missing limbs.... to intentionally bring a child into the world to live a pain filled life so that you could have your very own baby would be selfish.

But....celiac isn't a anything like that. Yes, the diet takes some getting use to but it's just a diet not chemo or a heart transplant.

This site is full of loving parents who have a houseful of celiac children.

Tell your Mom that you've decided the next child will be muslim and therefore pork free or that the next baby will have different parents! Don't explain, just let her think about it.

The Pacific Almond is also soy free according to thier website! I'll have to look for it tomorrow.

Anyone out there have a recipe for a protein shake that would be gluten/dairy/soy free?

I'm thinking of ordering egg white powder and coconut milk powder from Barry Farms. I want something shelf stable so I can keep it in my locker at work and just add water and maybe some fruit. I'd like to keep it low carb as I sometimes have issues with low blood sugar and yeast. I have tried truvia and didn't have an obvious reaction.

Thanks for helping me out on this and if it works you should all just sell your Wendy's stock as I'll cut my chili runs down to about once a week!

We have a shared kitchen. I allow bread and cheerios in the house. Nearly everything else is gluten free. We wash the dishes by hand then run them through the dishwasher. I spray gluten bread crumbs down and then wipe them up with paper towel, then respray and rinse the counter tops. I did buy a new toater for us gluten free people and I never buy gluten pasta.

I haven't been glutened at home in a long time so we must be doing all right.

Good Luck, RA

I'm glad he was arrested. I felt so bad for the parents who went out of thier way and paid extra to do the best they could for their little ones only to have them poisoned. It was so cruel.

How full on do you have to take this? All the way! Once you take gluten out of your system you will react more strongly to smaller amounts.

I don't have a completely gluten free kitchen because I have a large family. But I do everything I can to avoid ingesting even small amounts of gluten.

Remember that if you go gluten free before being tested the tests will come back negative. So if you're gonna need a Dr'd order to give up pizza get tested first. I didn't need all the tests. For me eating gluten is like kicking myself. I get sick quickly and stay that way for about a week.

Remember this diet has a learning curve to it so even if you draw a line and say, "After this point I will not eat gluten!" - you will make mistakes. Just keep reading labels and looking things up. Good Luck RA