Sorry To Say But

[jasonD2]

I am officially depressed and out of sorts again. My body is just not healing despite being completely free of gluten and other foods. I find that as time goes on I have to cut more and more foods out of my diet and am now 17 lbs underweight. I just had an endoscopy and the biopsy shows normal looking villi...so shouldnt i now be healthy & able to start bringing foods back into my diet?

Over the summer I was on a candida diet and the supplements i was on triggered gastritis (which was apparent on the endoscopy) so now I have to avoid a bunch of foods i was able to tolerate before because they cause reflux and upper GI distress. I love avocados and had to stop eating them..cant eat nuts, seeds either and am getting no calories in my diet. I pretty much just eat brown rice, chicken and green beans w/ olive oil 4 times a day..everyday. I am going to get tested for nutrient deficiencies this week..I bet i have a ton since there is no diversity in my diet. Im hoping that correcting any deficiencies will allow my system to finally heal.

On top of everything else, i developed lichen planus in my mouth so I would have to guess that there is some autoimmunity taking place in my body as a result of all the problems ive had.

Is there a light at the end of the tunnel? Does anyone have the same problems i have with food? This is just nuts...im so skinny and hate the way i look. i used to attract women quite a bit when i was healthier and lately they dont even look at me

[mushroom]

Sorry to hear you are still having problems, Jason. Can I ask a quick question?? Without going back through all your topics and posts, because I honestly can't remember. Have you gone out to get a second, or third, opinion on your condition?? Is it perhaps time you went to one of the major celiac centers for a consultation in the hopes of getting further answers? This is a long time to continue to have the kinds of problems you are having, and I do feel for you. I think if it were me, I would be looking around elsewhere for answers. At this point, I think attracting women is the least of our problems, it is getting healthy you need to worry about.

[sandsurfgirl]

I'm sorry that you are suffering like this. Are you using regular doctors or natural doctors for all of this testing and treatment? I know that the MD's make plenty of mistakes, but I've had some bad experiences with the naturopaths and whatnot too, and some of the stuff that's "natural" can really make you sicker. Also some of the testing methods that they subscribe to are based on sketchy science. I am all for natural medicine, but only if it's based on solid science and only if the practitioner will change course if something isn't working, instead of holding on to a belief system or set of medical ideals.

Are you trying to eat other foods and getting sick when you eat them, or are you off of them because of all these test results telling you not to eat them? I am new here and don't know your history, and I'm too sick myself to go back and look.

I hope you find answers. With such a limited diet, there has to be a way to get you all the nutrients you need.

My old doc was an MD but also did acupuncture and natural medicine. I made myself very sick with supplements and he told me to be extremely careful with that stuff. He had a woman who was dying and her liver enzymes were through the roof. They couldn't figure out why until she brought all her supplements and herbs in. She was doing more harm than good. I'm so sorry that happened to you and you got hurt by supplements.

[TrillumHunter]

I second what Mushroom says about going to a major celiac center. You need a head to toe check out.

This time please stay in contact with people during this depression. It does help.

Did you ever find a professional to help you?

[jasonD2]

I have seen multiple doctors. Regular MDs tell me to take prilosec, metamucil and miralax and to eat whatever I want. My ND tells me something deeper is going on and once that is fixed everything else will fall into place. Bottom line is I react adversely to most things i put into my body. I am seeing a celiac specialist now and I still dont have the answers i need.

When i first eliminated gluten, i felt so much better but then over time i started developing sensitivities to all the food i was eating to replace gluten. As for supplements, I really dont know whats good and whats not. I just try different things out to see if i get any relief.

For my candida i was taking wormwood, oxypowder and Symbion probiotics and something triggered my upper GI problem. i was then taking natural calm magnesium citrate and i believe that aggravated things so I switched to another magnesium. its all trial and error and im looking for a specific combination of supplements that will get the job done, but i am yet to find them

Stress is obviously an issue...when i dont feel well and cant eat i get stressed and it makes things worse.

[mysecretcurse]

I've been following (and relating to) your posts and some of your feelings for awhile now and I just wanted to say I'm sorry you are feeling so bad. I wanted to know if you've ever tried EFT...(emotional freedom technique). I'm pretty energetically sensitive and I pick up on a lot of anger, discouragement and doubt (disbelief that healing is actually possible for you, even if you DO really want it). Emotionals can block healing and progress, so I think using this therapy to get your emotions about your condition in check would do a lot for your healing. There is a lot of information on the net available about EFT and I will help you if you like. EFT therapy has helped me so much, and I think aside from doctors and diets and addressing the physical we need something to help our emotions too. Hope this helps, I'm sending love your way hun. <3

[tarnalberry]

Are you working with a psychologist at all? While my thoughts are a little different than mysecretcurse's, it's in the same camp. Stress can make you feel like crap. And I don't mean the purely dismissive "oh, you're stressed; go get some exercise" thing. I mean long term, chronic stress, even at moderate levels that you might not think of as stress any more, cause chemical changes in the body which produce whole scale physiological changes, particularly on the digestive system.

Sometimes, you need to spend some time addressing the "symptoms" (for instance, if chronic stress has caused you to be anemic, iron or B-12). But addressing those symptoms, while still important, won't solve a darn thing unless you get to the root of the problem - the high levels of stress hormones that your body is pumping out and the inability of your body to pump out sufficient relaxation inducing hormones to counter them.

You might try reading the book "Why Zebras Don't Get Ulcers", if you think this may be affecting you at all. It's not going to give you any answers, but may help you understand it better.

For me, chronic stress from my job had a huge effect on my life - more on my central nervous system than my digestive system in particular, but everyone's different. Honestly, the layoff I had in May was the best thing for me. Sure, it's harder to live on half the income you used to have (I'm married, my husband still works), but that's a more manageable stressor than my job was. (Different people handle different stressors differently. If you've got a lot of one that you can't handle well, it'll be a whole lot different of an effect on you than if you have a lot of one you CAN handle well.)

A psychologist can help you improve and maintain your coping skills, which may be of use here.

[TrillumHunter]

You're getting good advice from Tiffany and MSC. My husband has had a chronic health issue for over a decade. Managing the stress created by that is essential to my health. It sometimes gets the best of me, and my health deteriorates when it does.

[Fiddle-Faddle]

I'm wondering if Lyme Disease might be a possibility?

I know that it can CAUSE gluten intolerance, and other food intolerances. It can also act as a trigger for classic celiac disease. And fewer than half of those who have been diagnosed with Lyme Disease had the famous "bull's-eye" rash, and even fewer recall ever having been bitten by a tick! So it's not the sort of thing you can rule out just because it seems far fetched.

There are a few Lyme Disease threads on this board--a couple of years back, there was a surprisingly high number of members here who ended up testing positive for Lyme Disease. I think those threads contained a lot of good information, including how to find a "Lyme Literate Doctor," as apparently, doctors who "believe in" Lyme are even fewer than those who "believe in" Celiac Disease.

As I remember it, though, those members who were diagnosed with Lyme DID see improvement in their symptoms with treatment. As I remember it, all of those members had quite a bit in common with you symptom-wise: their symptoms were multiple food intolerances (to the point where they were all complaining that there was hardly anything they could eat) and joint pain.

[jasonD2]

Doubt it- never had a tick bite- thats something i woulda remembered

[Mskedi]

It couldn't hurt to check. Ticks can be sneaky.

[psawyer]

Respectfully, many people with confirmed Lyme disease have no recollection of ever having been bitten. Don't cast it aside just because you don't remember a perceptible bite.

[jasonD2]

Ok- im seeing my doc tomorrow and will request a test. Can Lyme be treated? i dont think my system can handle a course of antibiotics now (if i do have it)

[psawyer]

I am no expert on Lyme, but it defintely can be treated. I know that antibiotics are a common treatment. Perhaps one of our members with more Lyme awareness will add more.

[jackay]

I your frustration jasonD2. I'm still not feeling as good as I should. I can't pinpoint what foods bother me. I lost 38 pounds and gained a few back after being careful with CC. Now I am losing again.

I had bloodwork done that showed candida so I'm suppose to eliminate yeast and all sweeteners. Besides gluten, I tested intolerant to rice, beef, duck, veal, venison, anchovy, crab, crayfish, mackerel, mussel, sole, talapida, trout, egg yolk, flaxseed, lemon, beet, bok choy, corn, cucumber, eggplant, green pea, kale, lentil bean, lima bean, mung bean, navy bean, pumpkin, romaine lettuce, yellow squash, string bean, swiss chard, zucchini, banana, black current, blueberry, grape, grapefruit, pineapple, plum, raspberry, mushroom, cashew, hoops, sheep's milk, anise seed, licorice, green and black tea, carob, chili pepper, jalepeno pepper, kelp, rosemary, sage, vanilla.

I question a lot of these intolerances. Five months earlier I tested positive for caseine and soy through a stool sample. Have I recovered from those intolerances by avoiding them for that time? A few months ago, all nuts were bothering me. Was that the nuts or was it CC? Not so sure they still aren't a problem. I tested severely intolerant to lemon, mildly intolerant to grapefruit and not intolerant to lime or orange. That is puzzling. I tested intolerant to several beans so I am not so sure I should eat pinto bean, fava bean or kidney bean. I also question the seafood since I tested intolerant to some (severely intolerant to mackerel) and not intolerant to others.

I felt better last week and this week it has gone down hill. I am hoping that I am just detoxifying from the additional foods I'm avoiding. I'm frustrated with the new test results I got. I guess I'll only know by trial and error.

I do feel there are enough foods left for me to eat except that I'm suppose to rotate them every four days.

This past summer I noticed a red target on my back. I never saw a tick. I done two different times and it came back negative for lyme disease. I know lyme doesn't always show up right away. My doctor did say that other things can cause a red target.

It felt good to vent and get this all off my chest.

[Fiddle-Faddle]

According to the Lyme sites I've seen, the "target" (aka "Bull's-eye rash") is exclusive to Lyme Disease. According to my doctor, Lyme does not show up in tests for 6-12 MONTHS.

I'm not an expert in Lyme Disease, either, and to my knowledge, I've never had it. But I know enough people who DO have Lyme to have learned quite a bit. I believe that both Jason and Jackay have a good probability of having Lyme Disease.

I'll repeat from an earlier post:

Up to half of all those who have been diagnosed with Lyme never knew that they had been bitten by a tick.

Jason and Jackay, please seek more help for this. The longer one waits to treat Lyme, the less one recovers.

[jasonD2]

I got the test today- should get results next week. If I have Lyme I have no idea how im going to be able to tolerate antibiotics now...antibiotics triggered my celiac and food allergies and are the sole reason why my health is all messed up. If i go back on a long course i may as well kiss my life goodbye cause theres no way i will survive

[sandsurfgirl]

I was thinking about you today and I had a thought. It seems like you are pretty sick right now regardless of your diet. The few foods you are eating aren't enough to keep weight on you and give you the nutrition you need to get healthier. So is there a way you can try to find more vegetables and fruits you can somewhat tolerate in order to get more nutrition into your body? Whatever is going on with you, being on such a limited diet might also be making things worse.

Have you tried cooking all the vegetables to make them easier to digest? Just some thoughts. Maybe I'm totally wrong, but it occurred to me.

I prayed for you too.

[Wolicki]

I got the test today- should get results next week. If I have Lyme I have no idea how im going to be able to tolerate antibiotics now...antibiotics triggered my celiac and food allergies and are the sole reason why my health is all messed up. If i go back on a long course i may as well kiss my life goodbye cause theres no way i will survive

Jason

Try to take one day at a time, and not worry about what is going to happen tomorrow. I know it's hard to do, but the stress of worrying about the unknown is not helping you. If anitbiotics are the cure, then discuss your concerns with the doctor up front, and figure out an action plan. Oh, and be sure to take lots of probiotics if you end up on antibiotics again. One day at a time......

[jasonD2]

Thanks for the kind thoughts and prayers

Yep i cook all my vegetables and as for fruits, lately they have been upsetting my gastritis - could be fructose intolerance too. i also try to keep sugar to a minimum cause of the bacterial overgrowth & also sugar increases stomach acid

[jackay]

According to the Lyme sites I've seen, the "target" (aka "Bull's-eye rash") is exclusive to Lyme Disease. According to my doctor, Lyme does not show up in tests for 6-12 MONTHS.

I'm not an expert in Lyme Disease, either, and to my knowledge, I've never had it. But I know enough people who DO have Lyme to have learned quite a bit. I believe that both Jason and Jackay have a good probability of having Lyme Disease.

I'll repeat from an earlier post:

Up to half of all those who have been diagnosed with Lyme never knew that they had been bitten by a tick.

Jason and Jackay, please seek more help for this. The longer one waits to treat Lyme, the less one recovers.

Fiddle-Faddle

I noticed the target back in July and had all my symptoms before then. I just checked online for my labs from that day and see that my white blood count was low. I didn't notice it at that time because the doctor's comment was that all my labs were normal. Usually, there is an automatic flag when they are abnormal.

Do you suggest that I have the other kind of test soon or should I wait closer to the 12 month time to make sure it shows up? The doctor that ordered my original lyme test did put my on antibiotics. My regular doctor said that if it was lyme, that I would need a stronger antibiotic. Since it didn't show on the second kind of test, it went no further.

I know how much damage antiobiotics can do. I took a strong dose of probiotics when I took them, so hoped they didn't do any more damage to my gut. I tested positive for candida last month so I am wondering if the antibotics did do a number on me. Up to that point, I've always tested negative for candida.

[dilettantesteph]

I also felt great when I first eliminated gluten. Then I started to show symptoms again. So, I eliminated gluten free foods that were made in mixed facilities and felt better again. Later on, I again started to show symptoms. Lyme disease was also suggested to me. In the end I found that I need to completely avoid processed foods, and foods grown on straw, and carefully wash everything. I am healthier now than I was 20 years ago, despite being 20 years older. I guess that some of us are more sensitive to trace gluten than others.

Have you tried a really basic non processed diet? You could try it for a week and see what happens.