mela14

glad you're back! You will get better and stronger each day. Just give it time and rest a lot. Your body need it. You've been through a lot!

I've had 7 surgeries for abdominal adhesions and it takes evrything out of you but you WILL recover.

Hang in there and keep us posted!

welcome back,

let us know how you are just as soon as you can.

hope you are on the road to wellness now!

I was thinking the same thing too..........hope all went well.

aaascr,

i read your post and found it interesting that I used to eat quinoa too and I don't think it gave me a reaction. Then I started seeing a nutrionist who wanted me to have a little protein at every meal. I would have 2 hard boiled egss with the quinoa for lunch. That's when the trouble really started. I would get soooo sick. Not knowing I had food allergies other than gluten I figured there was something up with the quinoa so I stopeed eating it. Then I had the YORK allergy test done and eggs were at the top of the list for allergies...both the white and the yolk. I have never attempted to try the quinoa again as I am afraid. Could there be any cross contamination with quinoa? Not sure. My gut has been in a bad sate for weeks and I can't seem to get it to calm down. I guess I have to scrutinize more and definately stop the espresso that I love so much! it is starting to irritate me regardless of how little of it I drink right now. maybe..........when my gut is better I can sneak in a few sips from hubby's cup! Between the IBS and the allergies this is really tough. I am happy that you finally figured out what you can and cannot eat. I am still trying to get it right. Please pass along any tips that you might have. Even after I have a BM the pain and twisting are there....sometimes I even get bloated! oh well...............................

Donna,

I use to get the magnesium shot too but it was the larger needle and it hurt! I was also getting weekly vitamin infusions. My energy seemed to be better at that time but I was still having gut problems as I did not know about the food allergies.

does the dr give you a script for te magnesiusm to take home and then you do it yourself? Right now the only IM vit I am taking is B12 and it seems to help with fatiuge as well.

Does your internist give you the script? Not usre who to ask for it?

Has anyone tried these hosts and were they well tolerated?

I'm afraid to try anything new especially since having reactions with the regular host before! but..................it's starting me thinking of possibly trying it.

I've been sick for years with GI problems and feeling "ill" after food. Only recently did I discover the gluten and other intolerances. anyway, I clearly remember having hard candy and gummy bears while on vacation and getting soooooo sick. I couldn't figure out what it was! My husband and I were going crazy scrutininzing everything I ate. Who knew? Of course we dismissed th candy as being the culprit!

so yes, lots of candies have gluten....read everything! don't beat yourself up though as you are learning a new way to eat and trying to teach yourself discipline.

I am still trying to get it figured out and struggling with slip ups.

Donna,

I'm reading the advice that you gave linda...I'm going to have to take it myself.

I am having such a hard time with food. I eat things that I think are ok but then react terribly. The advise you gave to keep it simple is what I have to do. The thing is that I thought I WAS keeping it simple! Chicken seems to be ok......white rice is now bothering me too! My gut is always inflamed and bloated. Even certain veggies are doing me in. I have been trying to be gluten free for about 3 months now but have realized there are so many other intolerances and then the IBS acts up too! OKay, so i have to get back to basics and simple food. It seems that the less variety of food the better off I . One thing sets me off and then my gut is irritated for days!

soooooooooooo here I go again..think simple.........and gotta watch those veggies!

Will think of your words whenever I dare to venture onto something that is questionable! "Simple"!!!

Hi Donna,

thanks...and I am trying so hard to keep it simple. My gut feels better but not good yet. I just always feel soreness and inflamation. Sometimes I feel it really down low..in the bowel area....like it is irritated. I know this will take a while to heal but I pray that one day my gut will feel OK. It's been soooooooooo bad for sooooooo long.

thanks for your help. I'll try the higher fiber foods a little at a time as you suggested.

Thanks Donna,

The hot brown rice cereal was Bob's Red Mill. Coincidentally I reacted terribly to to his gluten-free hot cereal before I knew that I had a Buckwheat intolerance. I was sooooooooo sick from it...immeditately.

yesteday, the reaction started within a half hour. So either I can't tolerate brown rice or it was cross contaminated with buckwheat.

When I was working with my dietician we had me remove brown rice from my dinner as I was getting bloated afterwards. She said it had to much fiber for me and to stick with white rice. I did that about a month ago and have been ok when I have it with dinner.

I didn't think that the little bit of hot cereal would be as bad as the regular especially since I didn't eat that much of it. She also said that the whole grain could be more "irritating" than the white as it is the rice in it's entirity..........

My gut was sore and swollen ALL day and I felt so "ill".......... that's why I thought it was cross-contamination. It wasn't just bloating.............

anyway, I am still a little sore in the stomach and gut this morning but the swelling has subsided alsmost completely.

i am so afraid to eat..........I am nibbling on a few raisins (no preservatives added) and a cup of camomille.

thanks for your input,

I haven't approached the church yet and am moving in 2 weeks so I might take it up with the new church that I will be attending.

For now, I still go to mass but don't take the wafer. I remember times after church being really sick but not knowing from what. Only after learning about gluten did my husband and I see what it was doing to me.

My husband receives communion and I say a prayer when he returns....so I guess he takes it for both of us.

There is no way that I would eat the wafer knowing what I know now and remembering how I reacted.

I'm sure in light of health issues all will be forgiven but if you need to feel a part of the mass why not participate in another way like a reading or bringing up the gifts.

The wine is always another option although I am not comfortable with that for myself and lastly fidn out if you can bring your own communion wafers that are gluten-free and aks your priest if he would be willing to bless them for you.

Just my thoughts....good luck.

I had that test done about a month ago and also have LOTS of food allergies. I didn't need the York test tell me that I was reacting to food but it did help to pinpoint or at least validate my intolerances. It IS very hard but you will figure out what you can and cannot eat. I was working with a dietician when I was first told about the gluten intolerance and she had me eating sooooooooo many new and different foods that I was reacting almost daily. Then it made sense to me why I was not eating the foods that she put in my diet......I probably reacted to them before and avoided eating them subconsciously. Most fruits, fresh meats, fish and salads are ok. Nothing canned or processed. Think natural.....but eliminate the things that make you ill. If you tested positive and are not sure if you get sick from it try small doses to see how you react.

It's been 3 months since going gluten free and I am still having a hard time with other intolerances. This morning I reacted to hot brown rice cereal and remembered that I felt the same way when I had buckwheat, which I tested positive for, coincidentally made by the same manufacturer. So....it could be cross contamination. This is a learning experience. I'll never eat that hot cereal again....or any other made by that manufacturer! Of course it ruined my day and I am still feeling awful but what is the other option....Not eating???? You have to figure out what doesn't hurt you so that you can eat and maintain nutrition.

I don't do eggs or soy or peanuts anymore....just to name a few.

One of the good things that came out of my appointments with my dietician is that she had me keep a food diary. Everything I put in my mouth was documented along with the time and how I felt afterwards. When you don't feel well it's hard to figure out what did it but if you see it in black and white over and over then you know you can't have it. Consider keeping a food diary.

Email me anytime if you need to talk.

good luck!

I've had contact with a few people form this board and all were very helpful and encouraging. That's what were here for.

OK.........I did some investigating. The hot brown rice cereal was made by the same manufacturer that I had a reaction to with Buckwheat cereal. I also tested positive for Buckwheat intolerance with the York lab test. Could there be some cross contamination with buckwheat in the same plant that mills the brown rice? That's the only thing that I can think of! The symptoms have gotten worse all day and it feels like a total gut intolerance. I forced myself to eat some chicken breast that I grilled in spite of my gut feeling raw and sick. Another day wasted at home because of these damn allergies!

I needed to vent. Thanks,

Hi Faith,

Welcome to the board and good luck to you! I have a lot of the same intolerances and soy is a definate NO. I had the York allergy testing done which helped me to fine tune what I should be watching..It's still a challenge though and I have slips.

Eggs came up the strongest in so far as allergies and those seem to have been what I reacted a lot to! Milk also kills me. So....what I'm saying is that you could have a lot of other intolerances as a results of your celiac disease.

I recently started estrogen replacement (vivelle dot) and it has helped so mcuh with the night sweats and migraines....That could be part of your problem as you are perimenapausal. I had a total hysterectomy 2 years ago and was never put on any estrogen. It only messed me up more. So....I am fising one thing at a time.

Keep us posted as to how you are doing! Good luck with your new love interest too!

That in itself could be exciting!

Congratulations!!!

Imagine what it would have been like these past 13 years if yo hadn't stopped eating gluten or if they hadn't found out what it was!

It took them about 10 years to even mention to me that I had a gluten issue!

Good luck and keep on being gluten-free!

You must be getting ready for your surgery for tomorrow. Good luck and keep us posted. I'm SURE you'll feel much better once your intestines are unscrewed!!! but remember you will still have to keep up with the gluten-free diet!

I had surgery in July 2004 for severe adhesions which were keep my intestines stuck to other organs. BM's were horrible....as there was so much pain afterwards. I feel soooooooooooo much better since having everything freed up! but.....I still have to watch my diet with respect to the intolerances.

Hang in there better days are coming!

I had all my vit/minerals checked but all were OK an I still suffer fatigue and muscle pain. Do you have Espstein Barr? That may be something for you to look into.

What liquid vitamins do you take? Are they free of a lot of preservatives?

Good luck to you !

After getting "ill" from lots of different hot cereals I decided to try Organic Hot Brown Rice Cereal. Well, right after I had it this morning for breakfast I got really bloated and nauseous. Not this sick feeling like when I eat buckwheat or a gluten containing cereal but just really bloated, uncomfortable and nauseous.

Has anyone else had this? Could it be that the brown rice just has too much fiber for me? I don't have a problem when I eat small quantities of white rice with dinner. I had a banana with it but when I have bananas alone....No problem!

Thanks for your input,

I've decided that I would like to purchase a bread machine but there are sooooo many out there on the market that I'm not sure which one ot get. Any suggestions?

I've also been attempting baking but have not been successful in that either. I've made recipes from scratch and others that are boxed that only need a few ingredients. All were horrible and had to be thrown out! Does anyone have a simple recipe for a sugar cookie. I substitue for egg, milk and soy.

Thanks,

Hi Donna,

I see that people do have different views on the gluten issue for the biopsy. There is no way I would have gluten for the test! I will do the biopsy anyway next month, after my move, just to rule anything else out. If the damage is still visible then it's an added bonus. If not, I will continue to eat gluten-free. Yesterday was a better day with my gut. It is starting to heal from the gluten slip-ups and I've started to become much more aware and "fanatical" of everything I eat....especially medication which seems to have been the culprit this last time.

I am also not eating dairy, eggs, soy & peanuts. Eating out is a challenge and you never really know how the food is prepared .... even when I order plain foods. Often times they say that is is "fresh" and winds up being loaded wth presevatives..that's the killer. But I am starting to get better with that. Recently while out with my sister and family for lunch, to keep it safe I ordered a sald with olive oil on the side. By the time I got home I was famished! I guess it was better than eating anything bad for me.

So, I guess I just have to give it more time and continue along this path. Thanks for your help. Take care,

Thanks for the responses. I checked percocet and didn't see it either on the gluten free drug list. So I'm thinking that it probably DID have it in there. I started a new post somewhere to see if anyone knew if it was gluten-free or not.

The manufacturer lists the ingredients and it contains corn starch but then also pregelatinized starch. Not sure what that is....but maybe that's where the gluten is.

I woke with my gut still feeling irritated and sore... so someting upset it. OK....time for a little camomille.

Hi Donna,

Thanks for your sincere reply. You are right ...maybe it is too soon. I just get very discouraged when these slip-ups happen and then it sets me back emotionally and physically. I am tired of feeling so poorly but what choice do we have. I will try harder to avoid gluten and become more fanatical as you say. Hopefully things will start to simmer down.

I see that you also have fibro and alot of the same ailments as me. I was recently diagnosed with osteoporosis. I had a 10% bone loss in the hips and spine in the past 2 years since my hysteretomy. I tired actonel but it destroyed my gut. I am finally on estrogen and hope that with time it will help the osteo as I was not given it for 2 years.

As for the other food intolerances...did yours get better with time? or are you sitll avoiding them? I did the York test and it confirmed the food I was reacting to so I am not having them.

If the damage was bad enough do you think doing a biopsy would help even if I've been attempting gluten-free for the past 3 months? I guess it will just serve to rule anything else out? or....maybe it will still show some damage. Not sure but I won't go back on gluten for the test.

What are your thoughts on that?

OK guys, i just got back from the weekend and read a lot of your responses. I went to see a new GI dr this weekend in NJ where I will be moving back to in about 3 weeks. He seemed very compassionate and was not dismissive at all. I guess it was also good to have my husband with me. I seem to get a different reaction from doctors when I have him with me.

I discussed my blood results and attempt at gluten-free diet for the past 2-3 months. He told me that if I was feeling better to stick with it and that when I moved there next month he wanted to meet with me again. He also said that we may want to do a biopsy and that even though I would be gluten-free for about 3 months the fact that I am still reacting and having problems could mean that I am still ingesting gluten accidentally and the biopsy may show some damage. Especially if this has been going on for a long time. It said that it could take up to a year to heal and see some signficant results. He also gave me Zelnorm for the IBS but told me to cut it in half and try to go to using it once a day instead of twice. He didn't want to put me anything else as he feels that people that have celiac disease are more sensitive to meds.

WE talked about fibro, chronic fatigue and all the wonderful things related to auto immune problems. of course he encouraged getting out...which I do every day but he wants to see more exercising....which I will try to do.

I think he is right about gluten sneaking in there........I get it occassionaly with foods when I eat out and with meds that I take. Today I took half a percocet because I threw my back out and my gut is sooooooooo irritated and bloated. Here we go again. I just can't seem to get it together and then I get so angry with myself.

I have another appt with him next month and we'll discuss how I am progressing.

I asked him about my endoscopy from 6 years ago and he said if the dr was not looing for celiac disease he could have missed the diagnosis. He may not have gone down far enough for a biopsy. I also told him that my GI dr at the time never even mentioned gluten...so I don't htink he was looking.

Thanks for all the support......gotta go now. Not sure which is worse.....the lower back pain or the sowllen irritated gut!

I'm reading the responses to this post and hope that things will get better with time. I am only gluten-free about 3 months and gluten has been sneaking in there regularly.....most of the time in unsuspecting medications. Then it usually sets me back for days. Between the fibro, chronic fatigue, celiac disease, IBS it's very hard to get a good day in. I keep trying and pray that it will pay off in the end for all of us!

There have been times when things seemed like they calm down for a while....hopefully those periods of time will last longer.

I agree with stress mkaing things worse and exercise helping......now to get some balance between the two. I also agree that the celiac disease probably caused a leakiy gut and other food intolerances.