I Need To Complain!

[mamaw]

Maybe at this point in time you should just do the testing for allergies to everything. I think it is about 200 items . You order the test online.. Today is a migraine day for me so I'm not remembering the name of it but I'm sure someone else will....

Also when my kitchen was a combined gluten-free & gluten kitchen I cooked for my gluten family (wear a mask) & gloves if need be)& made their meals & in a small pot or pan cooked my piece of meat without any spices...I cook for a large family too. There was never a problem.......For me, I didn't want to over whelm my hubby or kids , it was sooooo much easier to keep peace & cook in two separate vessels...they got to eat & I did too..

And as much as I hate to say this, we ourself can make ourselves ill by fretting & worrying so much about celiac or anything, this can lead to other bigger problems & snowball all because of worry...with that being said NO, I'm not saying you are not Ill....I'm sure you are as this has happens to many,almost like the body is rebelling.... You will find the sources of foods that do not agree with you.. The elimination diet can be a slow road... When I did it, I found an item by itself was okay but when I ate it & added another food with it , I got sick.. At that point I would eat one thing & then an hour later I wiould eat the other , it is more like grazing...After I figured all that out & started taking digestive enzymes to help break down proteins, fats& & probiotics I was able to get back to regular eating...

Hang in there.....

[Bubba's Mom]

I am trying not to give up but it is so hard. I was sick again last night!! So it was either the melon, peanuts or my smoothie,i am not sure which one though. Is there anything I can do for these aweful cramps! I can't take it anymore!!

I'd drop the peanuts. I found them hard to digest..and you don't want to make your digestive system struggle.

Are they dry roasted? Sometimes they add flavor enhancers to those and they don't agree with us as we're healing.

I took out all of the main allergens, then went from there. I figured if I have leaky gut (proteins are leaving the intestine and entering the bloodstream) the most likely cause of a reaction would be to those main proven "trouble foods"?

Gluten, soy, dairy, eggs, peanuts, tree nuts, shellfish, fish (such as bass cod, flounder).

I added back eggs pretty quickly because I found they didn't bother me, then shell fish..no problems..you get the idea? Remember though, if you've been glutened..you may react to just about anything because your system is irritated.

Getting cc 3 times is quite a lot. It can take weeks to recover. I don't know what the circumstances were...do you need some brain storming to figure out how to prevent that from happening?

For cramps..can you take Motrin? I avoided it, because it can irritate a sensitive tummy. You may tolerate it fine though. Some people really like Pepto Bismal for those digestive symptoms.

[Littllemel]

I can't take motrin or NSAIDS. I went to a new GP today and she gave me Levsin but I am afraid to take it. Most meds give me dry mouth and sores amoung other side effects. She also said I might have a bladder infection because I have extra white cells in my urine but she is going to wait for the culture to come back before prescribing antibiotics. Now I am definitely scared to take those. What about my gut flora? Not to mention it has to be gluten/dairy/corn and soy free!!!

I think I have cried everyday for the past 2 months. Is this ever going to clear up? I am taking all nuts and eggs out of my rotation diet which takes a huge chunk out so Im really going to start losing weight now. I am so scared this disease is going to kill me in a long drawn out way.

I see my ND tomorrow and I think she has some kind of remedy she has made up based on all of my symptoms. I am feeling discouraged though. Almost like its some make believe fairy tale in a bottle that is suppose to help me. Nothing seems to help and I only get worse each day.

@bubbas mom, how quickly were you able to add back eggs? 1 week? 2 weeks? What other fish? Can I have talapia, tuna or salmon?

My cc issues were from a frying pan that was used with wheat but it has been dealt with. I had been using that pan off and on all month so I am sure it was more than 3 times and now my body is so overtaxed that I can't get it to calm down. I am down to 100lbs and falling!! I can't keep the weight on and it seems everyday I lose another food.

[Bubba's Mom]

I can't take motrin or NSAIDS. I went to a new GP today and she gave me Levsin but I am afraid to take it. Most meds give me dry mouth and sores amoung other side effects. She also said I might have a bladder infection because I have extra white cells in my urine but she is going to wait for the culture to come back before prescribing antibiotics. Now I am definitely scared to take those. What about my gut flora? Not to mention it has to be gluten/dairy/corn and soy free!!!

I think I have cried everyday for the past 2 months. Is this ever going to clear up? I am taking all nuts and eggs out of my rotation diet which takes a huge chunk out so Im really going to start losing weight now. I am so scared this disease is going to kill me in a long drawn out way.

I see my ND tomorrow and I think she has some kind of remedy she has made up based on all of my symptoms. I am feeling discouraged though. Almost like its some make believe fairy tale in a bottle that is suppose to help me. Nothing seems to help and I only get worse each day.

@bubbas mom, how quickly were you able to add back eggs? 1 week? 2 weeks? What other fish? Can I have talapia, tuna or salmon?

My cc issues were from a frying pan that was used with wheat but it has been dealt with. I had been using that pan off and on all month so I am sure it was more than 3 times and now my body is so overtaxed that I can't get it to calm down. I am down to 100lbs and falling!! I can't keep the weight on and it seems everyday I lose another food.

I added back eggs after one week off them. I did fine, except I tried Eggland's Best brand a couple of weeks later and reacted to them. I looked them up and the chickens are fed a diet with high amounts of soy. It came through to the egg. Stay away from those..or any you find locally that may be fed a high soy diet!

If you add the eggs back, wait a week and add the nuts. They're wonderful for adding in calories and healthy fat. I ate quite a lot of Sunflower seeds for a while.

Fish is listed as one of the main allergens. If you eat fish and it doesn't bother you, I say add it as soon as you can. The list just says fish, I gave examples. I think most fish is pretty much the same to your digestive system? Basically, you only want to add one food group a week so you know what you're reacting to..if you have a reaction. Hopefully, fish won't bother you. Be aware of what oils you use to cook it with though.

I looked up the Levsen. It looks like it calms cramping in the digestive tract and in the urinary tract? It might help you. If it isn't too expensive it might be worth a try?

Open Original Shared Link I found a site that lists the ingredients. You could ask the pharmacist about them?

I completely understand how you're feeling about losing weight and reacting to foods. It's scary! I bottomed out at 103# and was sure I was dying..and Dr.s didn't seem to understand how urgently I needed help? I'm finally slowly gaining a bit. I had to go on steroids though. The one they use for Crohn's (Entocort) It's supposed to stay in the intestine, so isn't as harsh as something like Prednisone. I was put on this md by the Mayo clinic in Florida. If the Levsen doesn't help you..the Entocort is an option for you to mention to your Dr. BUT..first let's see if your reactions are just because of the cc? That could be enough to keep things inflamed. That should improve with time.

I understand your reluctance to take antibiotics. It does set the gut flora regulation back to square one. I've been fighting an earache and didn't go to the Dr. because I knew I'd get them. It's standard treatment. If the Dr, finds an active bacteria though, it would be wise to treat it. Your system isn't strong enough right now to fight it off on it's own. An infection might be a big part of your problem?

Let us know how your meeting with the ND goes? I hope she has a miracle!

[Littllemel]

I am drinking bone broth made from chicken bones everyday. Should I be rotating this? Will I become intolerant to it?

[psawyer]

I am drinking bone broth made from chicken bones everyday. Should I be rotating this? Will I become intolerant to it?

Unless they have been somehow contaminated, the chicken bones are gluten-free. If you are making your own broth from them, it will be gluten-free. Just because you eat something daily does not mean you will develop a problem with it. It is not something that would worry me.

[Bubba's Mom]

I wouldn't worry about it either, unless you're adding canned stock to it that might have msg or autolyzed yeast extract? They *could* give you a problem, because they are chemicals.

I know how frustrating and dire your situation is to you right now. It's easy to question everything, which is your survival instinct kicking in. Question..but don't stress or worry. Your broth should be fine..and help heal your gut? Some cultures think of it as "penicillan" for colds, etc.

[Littllemel]

I went to my ND today. She wants me to stop the rotation diet since I seem to be getting worse since I started it. I have to go on an all grain and veg diet since those are the foods that bother me the least. That means quinoa, rice, oatmeal and amaranth for me for awhile. I seem to have trouble digesting proteins. She put me on HCL but only if I eat proteins. She also gave me a live probiotic that I have to keep refrigerated. I was on iFlora but she wants me on the live one. I have to drink 2 protein shakes a day that she gave to me that will make up for the loss of meat in my diet. She agrees with going off eggs and nuts too. I also have to continue my enzymes and L-Glutamine 3x a day along with my bone broth.

She strongly believes that I don't have Celiac and that my problem was caused by over use of steroids/nsaids and PPIs. The PPIs suppressed my acid so much that my stomach doesn't work properly to create enough acid to properly digest food which lead to the leaky gut. HCL is supposed to help with that along with ACV I take before each meal already. She also gave me a dose of some "remedy" that she made for me based on my symptoms.

I think it psychosomatic but I already feel better. (except for my kidneys) I am taking cranberry and D-Mannose 3x a day for that so I hopefully can avoid antibiotics.

Some of the stuff she says does go against what I have read on these forums like the rotation diet and eating all grains for awhile but she really seems to know what she is talking about. She says she has treated many people with leaky gut and alot of kids seem to have it. I feel good about trusting her judgement. It is nice to have some hope in all of this mess. Cross your fingers for me!! Say some prayers too.

[pricklypear1971]

Well, I don't know a thing about what she said except I will agree that steroids can mess you up on a psychodellic level. Been there, done that.

I hope it helps.

[JoyfulGF]

Littllemel, I will pray for you!

[mamaupupup]

Hi there!

I'm thinking of you! I can add a little on the BC front: I finally went with the Mirena IUD. I never thought I would and I'm so glad I did. My hormones/emotions are very well balanced, of course with some ups and downs. I tolerated BC pills before I had kids, but afterwards something changed. Sometimes gynecologists can be the best, most empathetic doctors out there.

Just an idea.

Sending you lots of strength!

[Bubba's Mom]

I went to my ND today. She wants me to stop the rotation diet since I seem to be getting worse since I started it. I have to go on an all grain and veg diet since those are the foods that bother me the least. That means quinoa, rice, oatmeal and amaranth for me for awhile. I seem to have trouble digesting proteins. She put me on HCL but only if I eat proteins. She also gave me a live probiotic that I have to keep refrigerated. I was on iFlora but she wants me on the live one. I have to drink 2 protein shakes a day that she gave to me that will make up for the loss of meat in my diet. She agrees with going off eggs and nuts too. I also have to continue my enzymes and L-Glutamine 3x a day along with my bone broth.

She strongly believes that I don't have Celiac and that my problem was caused by over use of steroids/nsaids and PPIs. The PPIs suppressed my acid so much that my stomach doesn't work properly to create enough acid to properly digest food which lead to the leaky gut. HCL is supposed to help with that along with ACV I take before each meal already. She also gave me a dose of some "remedy" that she made for me based on my symptoms.

I think it psychosomatic but I already feel better. (except for my kidneys) I am taking cranberry and D-Mannose 3x a day for that so I hopefully can avoid antibiotics.

Some of the stuff she says does go against what I have read on these forums like the rotation diet and eating all grains for awhile but she really seems to know what she is talking about. She says she has treated many people with leaky gut and alot of kids seem to have it. I feel good about trusting her judgement. It is nice to have some hope in all of this mess. Cross your fingers for me!! Say some prayers too.

I agree..PPIs can mess you up if you take them for a long time..espcially. The symptoms for low acid and high acid are the same. Most Dr.s don't test our acid levels before prescribing. They hear "reflux" and write up an RX.

I was having GB like pain for over 2 years. An ultrasound showed no stones, so the Dr. dismissed any other complaints about it. Six months after being DX with Celiac I got a HIDA scan and my GB was poorly functioning. Guess what one of the causes for that is? PPIs! I was told to consult a surgeon about removal, but I stopped the PPI instead. In a very short time the pain decreased dramatically.

Your ND may be right..but I would just caution you to be VERY careful about oats. If you do have gluten intolerance..cc oats are a big problem.

Be sure to note your reaction to quinoa too? Some people don't tolerate that very well either.

[Littllemel]

Turns out the HMF probiotics I were given were grown in milk. I can't believe my ND gave me those!! I can't believe I trusted her and didn't check on my own!! So i have been sick again, It took me 2 days to figure out what it was. Yesterday was another ER visit for me because I had a panic attack about how this is the way my life will be forever. I will never get well and I will always have to eat this crazy diet. I walk down the isles of grocery store seeing food after food that I can never eat. I turn down social invites so I don't have to show people my freaky diet.

The ER gave me a shot of Lorazapam and I actually got some much needed rest and was able to relax for a few hours. They gave me an rx but i can't use it because it has a lactose base. Figures!

Im starting to become afraid of food. I bring the fork up to my lips and think, Is this the time that my body will reject this food? I am on my all grains/veggies/fruit diet and I feel so scared that I am running out of foods. It's only a matter of time before I am intolerant to everything. Then what?

I am getting new weird pains in my liver area after I eat. What is that about?!

Once again, I hate my life!!!!

[Bubba's Mom]

Turns out the HMF probiotics I were given were grown in milk. I can't believe my ND gave me those!! I can't believe I trusted her and didn't check on my own!! So i have been sick again, It took me 2 days to figure out what it was. Yesterday was another ER visit for me because I had a panic attack about how this is the way my life will be forever. I will never get well and I will always have to eat this crazy diet. I walk down the isles of grocery store seeing food after food that I can never eat. I turn down social invites so I don't have to show people my freaky diet.

The ER gave me a shot of Lorazapam and I actually got some much needed rest and was able to relax for a few hours. They gave me an rx but i can't use it because it has a lactose base. Figures!

Im starting to become afraid of food. I bring the fork up to my lips and think, Is this the time that my body will reject this food? I am on my all grains/veggies/fruit diet and I feel so scared that I am running out of foods. It's only a matter of time before I am intolerant to everything. Then what?

I am getting new weird pains in my liver area after I eat. What is that about?!

Once again, I hate my life!!!!

Oh man! You can't catch a break I swear? If you have a problem with dairy it will affect your moods. No wonder you're feeling so down!

Have you had your gallbladder function tested with a HIDA scan? Your history of PPI use along with gluten intolerance would make you more likely to have GB dyskinesia. It might explain the pain you're felling?

If you've been gluten-free sine Mar.4, and have had some cc issues..you have a lot of healing to do. I question the large amount of L-Glutamine you're taking though. Maybe try cutting that to 2 times daily?

OK..so the last we knew, you were waiting for the results of the test on your bladder? Did the Dr. call? If it's a bacterial infection, it might be wise to take the RX?

Your probiotics..I would recommend Culturelle..the dairy free one. Check the label they make 2 kinds. It's been proven to make it to the intestine without being destroyed by stomach acid. It's a very good one.

I wouldn't recommend restricting protein. It's what your body needs to heal. In fact, I recommend a bit of protein with every meal. Take a digestive enzyme or a bit of vinegar(with the mother is best) in water with a bit of honey or sugar if you need it to get it down.

Actually, grains are hard to digest if your system is upset. Limit beans or be sure to take the enzymes with them.

I'd say avoid gluten-free alternitive foods..odd grains like quinoa, and amaranth, or manufactured baked goods.

Do you like gluten-free Rice Krispies? Use them as a cereal with coconut milk, or milk alternative of your choice.

Be aware of what oils you use. Some people don't tolerate canola, others are just fine with it. You need good fats though. Do you tolerate avacados? Olive oil? Coconut oil?

Most people do not react badly to veggies..except those that have nightshade intolerances. Load up on those.

Fruits..find the ones that agree with you and eat them. How about babanas, mangoes, peeled yellow delicious apples?

[Littllemel]

No I haven't had an HIDA scan. I just had an ultrasound and everything looked fine. According to the ER the tests I took with the DR last week were all negative. I know my kidney pain is from dehydration. That is my number one symptom when I eat a food intolerance. My mouth drys up, my kidneys hurt and water just goes right through me without being absorbed at all. Then comes the high emotions, the shaking, insomnia, hot/cold flashes and night sweats. These same things happen every time. If I tell a DR this info, it's like it goes in one ear and out the other. My symptoms are pretty quick too because I will know within 20 min of eating something that I am going to have a reaction. I will just start crying for no reason.

I will try and play it real safe tomorrow. I am cutting out every supplement that the ND gave me. If I become intolerant to another food tomorrow I will have to go to the ER again because I am sooo dehydrated. I am adding sea salt to my water and drinking lots of bone broth but it's just not working.

[Bubba's Mom]

No I haven't had an HIDA scan. I just had an ultrasound and everything looked fine. According to the ER the tests I took with the DR last week were all negative. I know my kidney pain is from dehydration. That is my number one symptom when I eat a food intolerance. My mouth drys up, my kidneys hurt and water just goes right through me without being absorbed at all. Then comes the high emotions, the shaking, insomnia, hot/cold flashes and night sweats. These same things happen every time. If I tell a DR this info, it's like it goes in one ear and out the other. My symptoms are pretty quick too because I will know within 20 min of eating something that I am going to have a reaction. I will just start crying for no reason.

I will try and play it real safe tomorrow. I am cutting out every supplement that the ND gave me. If I become intolerant to another food tomorrow I will have to go to the ER again because I am sooo dehydrated. I am adding sea salt to my water and drinking lots of bone broth but it's just not working.

Why are you adding sea salt to your water? Your body needs plain water. Salt water will make you more dehydrated.

When you have an IV they add salt because it's a constant drip and they don't want your electrolites to flush out, but I've never heard of adding salt to drinking water? When someone is stranded in the ocean after a boating accident, or whatever..they don't survive if they drink the salt water. It makes dehydration worse!

[Littllemel]

My ND instructed me to put a pinch of salt in my water and this is to help maintain electrolytes. I have noticed it works a little better than just regular water but some gatorade would be nice right now but Im too scared to try it.

I am seeing a new GI on monday and I will let her know about the GB dyskinesia and ask for a scan. I have researched it a bit and my symptoms do seem to match. I wonder if my intolerances will go away if I have my GB removed. That would be nice.

[nora-n]

I canot have any forms of milk either, so I end up cooking everything from scratch, but I am used to that.

The only thing that upsets me is reading celiac forums with people raving about this or that, and it contains milk and/or wheatstarch or glucose from wheat.

[Littllemel]

I am currently on day 5 after my last glutoning. I can't believe I keep being so careless. It was sunflower seeds that must have had CC. Now I am leary of my sunflower oil but I have not had any issues from that. I am down to just olive and sunflower oil as my only sources of good fats now. I am too scared to try others. My IgG shows I am intolerant to dairy, eggs, almonds, bananas, cranberries and pineapple but not wheats/glutens. Yet I am reacting to everything lately because of my leaky gut. I am off soy, corn, yeast. I am down to like 10 safe foods and I am a prisoner in my own home. I did get a HIDA scan and my GB is fine. I still have sharp pains in that area so I am assuming my liver is bothering me. I have been on Milk Thistle for about 2 weeks and some symptoms have died down but not enough. How long does it take to detox a liver?

This latest gluten illness has been the worst by far. I was in the hospital a couple of times this week. First it was for dehydration then malabsorption. I am not absorbing any of my water/foods and it makes me hypoglycemic and of course makes me lose more weight. This is day 5 and I am still having trouble absorbing my foods/fats. Having lots of C and floaters. Still shaking all the time from low blood sugar. And so weak that I spend most of my afternoons in bed with a killer headache. I can