Please Help Me!

[024Mandy]

HI, I am 19 years old and have been sick since I was a kid( Usually with rashes, swelling, anemia, and joint pain). Never getting any answers I learned to deal with symptons with Diphenhydramine. I started experiencing gut symptoms when I was 16 years old. extreme stomache pain and the 'D' every day. I was being passed off as IBS without having tests done( although at the time I didnt drink alcohol, coffee, eat meat and discovered I was also lactose intollerant). After moving to a new city and being stressed about my BM being unpredictable I saw a new doctor who immediatly tested for celiac disease( by blood, which I also discovered my iron was at 2!). When I found out it was positive my parents took me to ND within the week to get my biopies done( It was at least a 6 month wait here). They were positive and I started a Gluten Free Diet After I left the hospital.

It has now been over a year on an extremely strict gluten free diet and no lactose and live in a gluten free house. I have not felt even the slightest bit better. I had been on a wait list for colonoscopy and repeat endoscopy and had them completed Jan 29th. I have just got the results that I also have microscopic colitis and still have damage from celiac( that may show signs of healing, since this is a new doctor from the one who did my first tests I dont know if he could make an accurate conclusion??). I also have been on Plaquenil for about 8 months for my rashes and joints and its working! I am currently triing to find a proper dose of imodium to deal with symptoms and its not going well.

My Doctor has a personality problem and is not giving me proper answers. I guess my questions are how do I know if its the colitis or celiac symptoms? I have ate gluten by accident( once at my parents I had 3 buns made from flour, I thought they were gluten free ones) and I didnt feel any different, no worse no better. My gluten antibodies have returned to normal and am able to keep my iron and b12 at proper levels ( with supplements).

I have had constant 'D' with bloating and pain for 3 years without any changes. I am really frustrated and need to find someone who can help me get through this. I have so many questions and cant find the answers(especially for MC).

Thanks

[mushroom]

HI, I am 19 years old and have been sick since I was a kid( Usually with rashes, swelling, anemia, and joint pain). Never getting any answers I learned to deal with symptons with Diphenhydramine. I started experiencing gut symptoms when I was 16 years old. extreme stomache pain and the 'D' every day. I was being passed off as IBS without having tests done( although at the time I didnt drink alcohol, coffee, eat meat and discovered I was also lactose intollerant). After moving to a new city and being stressed about my BM being unpredictable I saw a new doctor who immediatly tested for celiac disease( by blood, which I also discovered my iron was at 2!). When I found out it was positive my parents took me to ND within the week to get my biopies done( It was at least a 6 month wait here). They were positive and I started a Gluten Free Diet After I left the hospital.

It has now been over a year on an extremely strict gluten free diet and no lactose and live in a gluten free house. I have not felt even the slightest bit better. I had been on a wait list for colonoscopy and repeat endoscopy and had them completed Jan 29th. I have just got the results that I also have microscopic colitis and still have damage from celiac( that may show signs of healing, since this is a new doctor from the one who did my first tests I dont know if he could make an accurate conclusion??). I also have been on Plaquenil for about 8 months for my rashes and joints and its working! I am currently triing to find a proper dose of imodium to deal with symptoms and its not going well.

My Doctor has a personality problem and is not giving me proper answers. I guess my questions are how do I know if its the colitis or celiac symptoms? I have ate gluten by accident( once at my parents I had 3 buns made from flour, I thought they were gluten free ones) and I didnt feel any different, no worse no better. My gluten antibodies have returned to normal and am able to keep my iron and b12 at proper levels ( with supplements).

I have had constant 'D' with bloating and pain for 3 years without any changes. I am really frustrated and need to find someone who can help me get through this. I have so many questions and cant find the answers(especially for MC).

Thanks

Hi Mandy: I am sorry you are still having problems.

Have you considered that you might have some other food intolerances that you are not aware of. Many of us do and only find out after eliminating gluten. I have had to eliminate not only lactose but corn, soy and nightshade family plants (tomatoes, peppers, potatoes, eggplant). Some are also intolerant of casein, not just lactose. Some do not do well on the gluten-free grains either. And you state you have microscopic colitis. This could be part of your problem.

Perhaps you could go back to the basics of chicken, fish, vegetables, fruits, rice and see if you stabilize. Then you could add things back in one at a time and try to figure out what is causing you problems. If that doesn't work you should go back to your PCP and tell him/her your problems.

I took Plaquenil for three years for my RA; it took care of that but it really stirred up my psoriasis, and eventually stopped working for me. I am glad that it is working for you.

Try being more restrictive with your diet and see if it helps. I hope it does. And then you can find out the culprit for your continuing symptoms.

Good luck, and be sure to let us know how you are doing.

[rinne]

I'm sorry you are still feeling so badly, I think the suggestion to go to a very basic diet and then add things back in is a very good one.

[dilettantesteph]

Since you still have damage from celiac, you are probably eating gluten without realizing it. You may be one of the "super sensitive" celiacs who react to very small amounts of gluten. A lot of "gluten free" foods are not gluten free for super sensitives. There are various posts on this site which discuss these issues. As others suggested you can go on a very simple diet until you are better. Then add new foods one at a time, waiting a week or so between to make sure that you don't react. Usually doctors assume that you are cheating on your diet, which might be partly why you can't get any straight answers.

[024Mandy]

Hi Mandy: I am sorry you are still having problems.

Have you considered that you might have some other food intolerances that you are not aware of. Many of us do and only find out after eliminating gluten. I have had to eliminate not only lactose but corn, soy and nightshade family plants (tomatoes, peppers, potatoes, eggplant). Some are also intolerant of casein, not just lactose. Some do not do well on the gluten-free grains either. And you state you have microscopic colitis. This could be part of your problem.

Perhaps you could go back to the basics of chicken, fish, vegetables, fruits, rice and see if you stabilize. Then you could add things back in one at a time and try to figure out what is causing you problems. If that doesn't work you should go back to your PCP and tell him/her your problems.

I took Plaquenil for three years for my RA; it took care of that but it really stirred up my psoriasis, and eventually stopped working for me. I am glad that it is working for you.

Try being more restrictive with your diet and see if it helps. I hope it does. And then you can find out the culprit for your continuing symptoms.

Good luck, and be sure to let us know how you are doing.

Hello, that sound like great advice, I had no idea that you could be intolerant to the protien in cows milk. Which reminded me that when I was a baby my parents could only feed me goats milk because I was allergic to cows milk. I am thinking there is a good chance I have grown intolerant to the casein.

Starting today I am going to only eat the chicken, rice, fruits, and vegetables. How long should I stay on it if I am not improving? maybe 7 days?

also, could I drink tea? margerine? spices? sugar?

[mushroom]

also, could I drink tea? margerine? spices? sugar?

I would hold off on the caffeine (some herbal teas would be okay), margarine okay, careful with the spices as some of the mixes contain gluten (McCormicks is supposed to be okay) and perhaps eliminate the sugar for a while in case you have candida overgrowth. Give it a good 7 days and you may well notice improvement. If not, come back for more help. If you do, only add back in one thing at a time! And give it a couple of days.

Others may disagree with me, in which case I am sure they will say so!

[efriedm2]

Since your 2nd endoscopy showed continued damage, you must be getting gluten somewhere! What gluten-free brands have you been eating? I had some trouble over the first year of my gluten-free diet, and found that some supposedly safe brands weren't really so safe. For example, I ate a ton of Amy's products, but came to find that many celiacs react to Amy's and don't trust the brand. So, which brands do you rely on most?

[024Mandy]

Since your 2nd endoscopy showed continued damage, you must be getting gluten somewhere! What gluten-free brands have you been eating? I had some trouble over the first year of my gluten-free diet, and found that some supposedly safe brands weren't really so safe. For example, I ate a ton of Amy's products, but came to find that many celiacs react to Amy's and don't trust the brand. So, which brands do you rely on most?

My antibody count has returned to normal which means that I have not been consuming gluten. Also my Doctor said that the damage was not active celiac disease(meaning reoccuring damage). The damage they detected is villi that have not healed since being on the diet ( I am worried that I may have RCD). But if you still want to know I eat mostly food from Kinickinnick. thanks

[Janessa]

I agree with others here you should go on a super simple diet and slowly add foods back in, talk to your doctor about an elimination diet, it helped me discover I was having very strong reactions to corn and also reacting to soy and rice.

[rinne]

Hello, that sound like great advice, I had no idea that you could be intolerant to the protien in cows milk. Which reminded me that when I was a baby my parents could only feed me goats milk because I was allergic to cows milk. I am thinking there is a good chance I have grown intolerant to the casein.

Starting today I am going to only eat the chicken, rice, fruits, and vegetables. How long should I stay on it if I am not improving? maybe 7 days?

also, could I drink tea? margerine? spices? sugar?

I think you may be onto something with the casein, I would think that if it is going to help then seven days should at least give you an inkling of whether you are on the right track. There are a percentage of celiacs who just don't heal on going gluten free, you are not alone. Some of us have problems with all carbs including rice.

I think olive oil or coconut oil, or ghee. Fresh ginger is great for the digestion, you can add it to stir fries or make tea with it or grate/squeeze the juice and add it to water. Peppermint tea, just pure peppermint or spearmint is great for settling the stomach. Some vegetables, the brassicas like cabbage or broccoli can be hard to digest so you might want to avoid them the first week, the nightshades, potatoes, eggplant, tomatoes may contribute to inflamation. Too much fruit is probably not a great idea either, one or two pieces a day.

I think Kinickinnick is challenging for some, I think they use something that is high in glutamates and glutamates don't agree with everyone. MSG is a glutamate.

A food journal is helpful too.

[Fiddle-Faddle]

Be aware that most margarines contain casein (read the label)--you'll have to look for special dairy-free margarine.

I was wondering if the Plaquenil or something else you are on might be causing your intestinal symptoms?

Also wondering if some kind of bacterial infection of the gut or even Lyme disease might be a possibility. One member here found that she had tapeworms, which caused similar symptoms.

Good luck, and please keep us posted.

[Gfresh404]

I'm just curious but what is your diet like?

[024Mandy]

I'm just curious but what is your diet like?

I usually eat alot of fresh vegetables and meats, alot of rice(its my favorite!) and other starches. I know I should eat more fruit. I only have bread once in a while because I don't have time to keep up with making it. I eat on a pretty regular schedual (breakfast around 6, lunch 11:30, supper about 5:30 )I find that if I eat more often and smaller meals I have to use the bathroom more often so I can keep bm's undercontrol better if I eat 3 meals and about at the same time everyday. I think I eat pretty healthy I do most cooking myself and I'm pretty small but I have a large appetite. I eat alot of soy products ( icecream, creamcheese, milk). I occasionaly eat dairy but I take lactase enzymes. I try to stay away from junk food like chips, candy and other processed packaged foods, but popcorn gets the best of me.

So this is my 4th day on a very basic diet (vegys fruit chicken rice) and there has been no improvement. I will stay on the diet for about 3 or 4 more days. If I dont get better I guess I can blame the MC or RCD, which stinks becasue there is nothing I can do about it. I was sure it was going to be the casein!

[024Mandy]

When I have consumed a large amount of gluten or any amount( by mistake of course!) I have not reacted at all. In fact I have never had a reaction and I started the gluten-free diet over a year ago. Why do you think nothing happends???

[Fiddle-Faddle]

If you are lactose-free but not casein-free, it's quite likely that your gluten-damaged intestines have not been able to heal because of the casein. Casein is the protein in dairy (lactose is the sugar in dairy). There have been a lot of reports on this board that casein prevents the gut from healing. https://www.celiac.com/categories/Celiac-Di...Celiac-Disease/ Lactase pills do NOTHING to help with casein sensitivity.

For joint pain, it seems that both gluten and casein can trigger RA and RA-type joint pain. Apparently, many people are able to get rid of their joint pain by eliminating both: Open Original Shared Link

Microwave popcorn and pre-seasoned popcorn do contain dairy, as well as maltodextrin, which is not gluten, but a few of us here are sensitive to it. In fact, I seem to react to maltodextrin quite easily, but my gluten reactions are "invisible!" In addition, quite a few people on this board are also sensitive to corn and/or soy.

Are you eating rotisserie chicken? Many brands contain gluten, believe it or not.

What is RCD?

[jerseyangel]

Mandy,

Everyone has given you good advice, but I'm wondering if your doctor has treated you for the MC. I have it, and there are meds that can put it into remission--my GI offers different levels of treatment--starting with milder meds and resorting to the stronger ones only if needed.

It could help explain your continuing D and bloating. I would suggest asking your doctor specifically about it

[Anna and Marie]

Hi Mandy!

I too am sorry to hear of your conditon. Perhaps you have another chronic illness that has gone unnoticed? It could be Crohn's if you are still getting sick. Or the lactase pills, I don't think any of them are gluten free. I hope your situation gets better and pray for the best!

~Anna

[ang1e0251]

I am so sorry you're still feeling bad.

I started experiencing gut symptoms when I was 16 years old. extreme stomache pain and the 'D' every day.

It has now been over a year on an extremely strict gluten free diet and no lactose and live in a gluten free house. I have not felt even the slightest bit better.

I guess my questions are how do I know if its the colitis or celiac symptoms? I have ate gluten by accident( once at my parents I had 3 buns made from flour, I thought they were gluten free ones) and I didnt feel any different, no worse no better. My gluten antibodies have returned to normal and am able to keep my iron and b12 at proper levels ( with supplements).

Even though you say your antibodies are normal, when you say, you occasionally eat bread and dairy with Lactaid, you are not Gluten-free Casein-free. Remember that those two also are sneaky and can be in substances we don't realize. The symptoms that are digestive do sound like an intolerance even though you don't notice a difference. Lactaid doesn't work for me butdoes for my DD.

What brand of spices do you use? What margarine? Cooking oil? What supplements and are you still taking these and medicines on your modified diet? What do you drink?

[AliB]

Although you may well have an intolerance to gluten as has been mentioned many of us have issues with other foods and those generally tend to be other carbs.

Some of us just cannot digest certain foods properly. For some it may be carbs, for others fats or protein and some with a very damaged gut can have problems with all of them.

Personally for me it has been carbs. Pretty much most of my life, but since my digestion finally collapsed just over a year ago I had problems digesting a lot of foods, fats and protein included.

It has only been by going back to basics that I have allowed my gut to start healing properly. Although we may be gluten-free if we are still eating foods that are keeping the damage going then we might as well be eating gluten!

It is always assumed that if you are not getting better you must be getting gluten somewhere but that is not necessarily the case. If, for you it is carbs that are the problem then the rice may be a contributor.

Have you tried taking any broad-spectrum digestive enzymes? They can help us with the digestion of different foods, but it is not wise to rely on them alone. All those undigested carbs help support pathogenic microbes within the gut which can contribute to inflammation so getting back to a basic diet would be a good place to start.

Interestingly the Specific Carb Diet was the original Celiac Diet back in the 40's and 50's and very successful it was too. It was ousted by the gluten-free camp but many who are not getting better on gluten-free alone have been following the SCD with good results.

There is a thread on here in the 'Other Food Intolerances' section and 'breaking the vicious cycle' is the main website. There are lots of other sites and blogs springing up all the time with loads of yummy recipes too.

I am just being tested again for Helicobacter Pylori. I had a test a year ago that came back neg but definitely have something going on down there. Interestingly I read that raw garlic can be a good antibacterial and I have started taking some - not just the capsules but the real thing. It was hard going at first but I am getting used to it (my family doesn't agree!). More importantly, my stomach has settled right down so the garlic must be having a go at something in there!

I have been concentrating lately on eating much more raw fruit and veg to get the enzymes and nutrients and generally have much more energy so I would certainly advocate that. We don't get enough enzymes in general - pasteurisation of milk kills them in that - the things that could help us digest it, and cooking kills them too so having some raw 'live' food is vital for health.

[AliBell]

Mandy,

I am a 21 year old female who was diagnosed with Celiac in January 2008. I am very strict with my diet and have never cheated and had gluten. And I am not feeling better at all either.

I had a repeat endoscopy after being gluten free for 6 months and my villi were growing back (they were completely flat when I was diagnosed, as my doctors believed I was suffering for 4 years). The only symptom that has gone away is constantly having diarrhea. Now I am constantly lightheaded, I get vertigo, I have terrible muscle aches, I get shooting pains through my body, I had a partial seizure, I am still constantly tired.

I have seen an endocronologist who told me I didn't have hypothyroidism although I was convinced I had that. I went to a neurologist who gave me an MRI and EEG which were both fine. My primary care gave me blood work for Lyme Disease and Diabetes, I didn't have those. She also tested me for other food allergies, which I do not have. (I have had a peanut allergy since I was a year old). She checked for tons of vitamin deficiences none of which I have. I don't know what to do either.

[Alli-Ely]

Hi Mandy,

I'm sooo sorry that you still are sick. First, I would find a doctor who will give you some straight answers even if it is that they aren't sure what's wrong and that you should see a specialist. Also, the thought that you are allergic to other foods is very possible and I would consider a very simple diet for now. After I was diagnosed the one thing that I was warned of was medication. You wouldn't think it but gluten can be in your medicine, and makeup (including just chap stick) so I would also check your medicine and any make up or chap stick that you use for possible gluten since you still have damage from gluten.

I hope this helps you and that you start feeling better soon.

[ang1e0251]

I hope you get some answers to your ongoing distress. But I still stress the food journal with symptoms. I have had worsening pain that I have finally traced to drinking Earl Gray tea. I was even losing muscle tone in my shoulder because the pain didn't allow me to use it properly. Now I found other stories on the net that report the same problem.

Sometimes it is something very simple that you eat nearly every day causing the problem and it's very hard to identify it without extra vigilence. That's where the journal comes in. It is another tool to help you. I'm not saying don't go to the dr. I am saying don't expect them to have all the answers. They don't have a way to test for some of these problems and they often don't have much knowledge of nutrition. Help yourself in anyway you can along with your dr.

The comment about the simple diet is the best. When you do an elimination diet, it makes it easier to narrow down foods that cause you trouble. Those of you still feeling bad, you have nothing to lose.