Seriously...

[JRock]

I would like to cuss out myself and everyone else right now. Since October, my tTg antibodies have gone from 100+ to 86 in late December. I got referred to a specialist for my constant intestinal pain. My test (I provided the blood Wednesday) shows antibodies of 81. Seriously... what am I doing wrong? I've stopped taking supplements (and have no energy because all I'm eating is rice), I rarely take pharmecuticals without knowing they are FOR SURE safe... I use gluten free lotions, shampoos, lip balms, etc.

What the heck is going on? Why am I still so miserable? My doc is ordering an abdominal CT scan and honestly, I'm about ready to be done with putting ANYTHING in my mouth. He thinks I'm cheating... I'm not... but he's very accusatory with me. It ticks me right off - you don't try this hard to be healthy then get slammed with this. It's BS to be honest. And I have no one to back me up.

I'm so tired these days, and in pain, and miserable. I'm 27 and still hope to get prego someday. But will I ever be healthy? I don't know what to do... and I went to the only non-religious book store in my region to find nothing but cookbooks. I am feeling very alone right now.

Jen

[cyberprof]

I would like to cuss out myself and everyone else right now. Since October, my tTg antibodies have gone from 100+ to 86 in late December. I got referred to a specialist for my constant intestinal pain. My test (I provided the blood Wednesday) shows antibodies of 81. Seriously... what am I doing wrong? I've stopped taking supplements (and have no energy because all I'm eating is rice), I rarely take pharmecuticals without knowing they are FOR SURE safe... I use gluten free lotions, shampoos, lip balms, etc.

What the heck is going on? Why am I still so miserable? My doc is ordering an abdominal CT scan and honestly, I'm about ready to be done with putting ANYTHING in my mouth. He thinks I'm cheating... I'm not... but he's very accusatory with me. It ticks me right off - you don't try this hard to be healthy then get slammed with this. It's BS to be honest. And I have no one to back me up.

I'm so tired these days, and in pain, and miserable. I'm 27 and still hope to get prego someday. But will I ever be healthy? I don't know what to do... and I went to the only non-religious book store in my region to find nothing but cookbooks. I am feeling very alone right now.

Jen

Jen, I don't have any magic words for you, I wish I did. I have heard that numbers take a long time to go down in some people (my bloodwork was and is negative) so that part should worry you less. It took a lot of gluten to get you there and will take some time to fix it.

Having said that, I *thought* I was gluten-free for 18 months and only found out after that I was getting glutened almost daily through horse feed and chicken feed. I'm the chief feeder at my house and it never occured to me. I now wear a mask but I was IRATE for a while having given up pizza but still feeling lousy and having stomach problems.

You may have a similar thing where you're getting gluten. Just be extra careful. Go easy on yourself. Tell the doctor off or get a new one. Maybe go to a celiac center (UChicago, Maryland, Columbia)if you're close enough - look on the doctor thread for ideas.

Good luck to you. I hope you get relief soon.

[cat3883]

I was diagnosed on October 15th by bloodwork and endoscopy. My GI said he wouldnt even do bloodwork for 6 months because it will take that long to see a significant change. Yours is going down. Maybe at 6 months yours will be way down. Good luck to you

[dilettantesteph]

It took me about a year of healing and learning how not to eat gluten by accident before I felt better. Do you have a gluten free household? We tried for months to have a mixed household. My non celiac daughter was so careful, but my celiac son and I were not able to be healthy without it. Can't you eat some fruits and vegetables? You can peel fruits if you are worried about coatings. We have had good luck with Motts natural applesauce. Yams are highly non-allergenic. Are you at least eating brown rice? Are you getting your rice from a place that also processes wheat? I hope you can get this figured out soon. Being in constant pain is a bummer. I hope you have someone to take care of you. BioK was also really helpful to us during healing, but not cheap.

[ang1e0251]

I don't have any magic answers for you except what's already been mentioned. It does take time.

You mentioned you are eating rice. What do you season it with? What else are you eating?

I met some friends today who's daughter is celiac. She was still having pain and D. She recently visited an allergist who identified 5 other foods she's sensitive to. One of them was potatos which she was eating a lot of. Her mom said since she went off those foods she's much, much better and the D is finally cleared up.

My assistant's son and his son are both allergic to olives. I've never heard of anyone else with that one. When they moved back in with their parents, she asked her son about the boy's cough and realized the olive oil they were cooking with was causing a reaction in him.

It isn't just cut and dried. Our bodies are big puzzles and it's not that easy to figure out all the pieces. I think you've seen good progress so don't be discouraged by that. Let us know specifically what you're eating and how it's prepared. Someone is sure to spot some kind of item that will help you.

[JRock]

Hi Again,

I'm feeling better tonight - after making that post I called my Dad who is an RN. He said the same thing you said Cat - that it would take months if not a year for my antibodies to get to the level where the gastro doc wants them. I'm glad the base docs finally referred me off base - military docs don't really have time to listen to you, so it's always nice to be given the ok to go to a specialist. But even my gastro doc doesn't seem too educated on celiac.

My house is completely gluten-free and for the past three weeks I have been on a very simple diet. Initially it was white rice, well-cooked carrots and chicken, then someone on the forum suggested that rice might be causing the pain and D, so I eliminated that for a while and did sweet potatoes instead. Well, the base doc gave me lomotil so my D has decreased, but the pain is still there, it seems unrelated to the food I consume (with the exception of dairy and of course gluten). My hubby is gone so I'm on my own, but I think that's probably better anyways. He feels so helpless when I'm in pain and he can't help. I have vicodin for when I get glutened and I asked my base doc if I could take it if I was in severe pain. He said ok, so I've been taking a half at a time.

The upside to all this is that my medical bills are nonexistent. Granted, that comes at a cost - my husband is in the desert right now. He's in the USAF so all of the tests, diagnosis, etc were free. We live in Utah so if anyone knows of a celiac specialist I would have to pay out of pocket, but at this point I'll do whatever I can to get better. I don't eat out, I threw out any glutened utensils, pans, lotions, meds, etc. This disease is so frustrating. Hopefully I'll have the abdominal CT scan next week and that will tell the doc something. I'll let you guys know. Thank you for the support - I don't know what I would do without this forum

Jen

[JRock]

Hi again,

Wow, it's been a crazy past few days. Woke up Monday with intense abdominal pain - couldn't stand up straight. Then I had three BMs in the next 20 minutes (which is weird, I don't usually feel so terrible in the mornings) and I saw blood. I called in sick to work, took a vicodin, and waited til 9am for the gastro doc's phone lines to open (I get up at 5am for work so it was a long wait). So I explained my symptoms for the nurse and they had me in for a CT scan Monday at noon, then around 230 they wanted more blood work. The nurse told me to start a liquid diet just in case the Dr. wanted to do a colonoscopy.

So I haven't eaten in 29 hours (finally got the go to add broth and 7-up, the first 24 hrs were just water). The nurse called today around 3pm to let me know that the CT results and blood tests were normal - weird... so the doc wants do do a colonoscopy tomorrow at noon (yeah, they started me on all that fun "cleansing" stuff... fun fun) and if he doesn't see anything in there, while he's already got me under he's going to do an endoscopy. A gal from work is giving me a ride (wish family lived closer, it's a bit embarassing). At any rate, I just wanted to give you guys the update.

So what happens if they don't find anything? Am I just crazy? Switching food didn't help, so I really hope they see something tomorrow that is easily fixed. This body is driving me nuts!

Jen

[Darn210]

Jen,

Just wanted to wish you well tomorrow and hope they find some answers for you.

[oceangirl]

I hope you feel better soon.

It took 2 YEARS for my numbers to get down within "normal". And, yes, you may have other intolerances, especially this early in the game. There is a learning curve and no magic pill...

Good luck, keep reading here...

lisa

[ang1e0251]

Wishing you the best on your tests. I hope it gives you answers. We'll be here for you.

[JRock]

Hi again,

I'm relieved to report that the colonoscopy and endoscopy showed no abnormalities that the doc could see. He did take another duodenal biopsy. He definitely thinks I'm sneaking gluten. I'm happy that I don't have anything serious going on, but unhappy because the pain and all the D definitely wasn't in my head. And I already tried the elimination diet. When I was on rice, carrots, and chicken I still had D and pain. Same with when I replaced rice with sweet potatoes.

So tomorrow I'm making the calls on all of my lip balms to verify that they're gluten free (most of them have vit E), then I'm tossing any remaining items that may be suspicious unless the company confirms gluten-free status. I've gone off all of my supplements for over a week now and it hasn't helped (they all have clean ingredients and are marked free of gluten). So now I'm going to call the pharmecutical companies again to check the meds I've been taking. I've been working so hard to be gluten free, I just can't imagine that I brought this on myself.

I also bought two books on Amazon regarding celiac. Still can't believe that my local B&N didn't have anything on it but cookbooks.

Anyways, thanks for the support - any new ideas would definitely be appreciated! It's been a rough month.

Jen

[oceangirl]

The sweet potato, while good for you, could be too rough for you still. They have lots of fiber. I still cannot eat rice- I get bad bloat and indigestion-however, I CAN eat Tinkyada (rice) pasta. Weird, I know, but I think the Tinky might be processed enough to ease its digestion.

In the beginning I had the best luck with plain meat or fish, bananas, well-cooked veggies and not too much of them.

Feel better soon,

lisa

[ravenwoodglass]

Hi again,

I'm relieved to report that the colonoscopy and endoscopy showed no abnormalities that the doc could see. He did take another duodenal biopsy. He definitely thinks I'm sneaking gluten. I'm happy that I don't have anything serious going on, but unhappy because the pain and all the D definitely wasn't in my head. And I already tried the elimination diet. When I was on rice, carrots, and chicken I still had D and pain. Same with when I replaced rice with sweet potatoes.

So tomorrow I'm making the calls on all of my lip balms to verify that they're gluten free (most of them have vit E), then I'm tossing any remaining items that may be suspicious unless the company confirms gluten-free status. I've gone off all of my supplements for over a week now and it hasn't helped (they all have clean ingredients and are marked free of gluten). So now I'm going to call the pharmecutical companies again to check the meds I've been taking. I've been working so hard to be gluten free, I just can't imagine that I brought this on myself.

I also bought two books on Amazon regarding celiac. Still can't believe that my local B&N didn't have anything on it but cookbooks.

Anyways, thanks for the support - any new ideas would definitely be appreciated! It's been a rough month.

Jen

When you check those lip balms don't ask if they are gluten free as what the Vit E is derived from. Many companies consider Vit E derived from wheat germ oil to be gluten free but it is not. I have not found many lip balms that I can use, but as with lotions and that sort of thing I found after a while I no longer really needed them. For me using a lip balm with gluten makes my lips dry and makes them peel, thus I use more lip balm which makes them feel better while it's on but then makes them dry and peely encourageing me to use more lip balm. Kind of a vicious cycle.

[Gfresh404]

I would like to cuss out myself and everyone else right now. Since October, my tTg antibodies have gone from 100+ to 86 in late December. I got referred to a specialist for my constant intestinal pain. My test (I provided the blood Wednesday) shows antibodies of 81. Seriously... what am I doing wrong? I've stopped taking supplements (and have no energy because all I'm eating is rice), I rarely take pharmecuticals without knowing they are FOR SURE safe... I use gluten free lotions, shampoos, lip balms, etc.

What the heck is going on? Why am I still so miserable? My doc is ordering an abdominal CT scan and honestly, I'm about ready to be done with putting ANYTHING in my mouth. He thinks I'm cheating... I'm not... but he's very accusatory with me. It ticks me right off - you don't try this hard to be healthy then get slammed with this. It's BS to be honest. And I have no one to back me up.

I'm so tired these days, and in pain, and miserable. I'm 27 and still hope to get prego someday. But will I ever be healthy? I don't know what to do... and I went to the only non-religious book store in my region to find nothing but cookbooks. I am feeling very alone right now.

Jen

Whenever I accidentally get "gluttened," I find that supplements help greatly speeding up the healing process. I would recommend a good multivitamin with a lot of B vitamins, flax seed oil, probiotics, one in particular called Threelac works miracles for me, although it is rather expensive and does not have the same results for everyone, I would do some further research on this since some people have experienced flu like symptoms, but I think it is just your body reacting to getting rid of all that crap. Also, peppermint oil and a lot of herbs work well, especially ginger and cinnamon. Also, prebiotics such as bananas and gluten free oats (if tolerated) can help a lot too. This is just what I have found to be very helpful. Good luck and hope you feel better, just remember, it might not seem like it, but a lot people are going through a very similar situation. For the longest time I could not figure out what was bothering me, then realized the lays potato chips were posing a problem. It was difficult because sometimes I could eat them and other times they bothered me. You really have to be careful with cross contamination. Hope this helps

[TES]

I would like to cuss out myself and everyone else right now. Since October, my tTg antibodies have gone from 100+ to 86 in late December. I got referred to a specialist for my constant intestinal pain. My test (I provided the blood Wednesday) shows antibodies of 81. Seriously... what am I doing wrong? I've stopped taking supplements (and have no energy because all I'm eating is rice), I rarely take pharmecuticals without knowing they are FOR SURE safe... I use gluten free lotions, shampoos, lip balms, etc.

What the heck is going on? Why am I still so miserable? My doc is ordering an abdominal CT scan and honestly, I'm about ready to be done with putting ANYTHING in my mouth. He thinks I'm cheating... I'm not... but he's very accusatory with me. It ticks me right off - you don't try this hard to be healthy then get slammed with this. It's BS to be honest. And I have no one to back me up.

I'm so tired these days, and in pain, and miserable. I'm 27 and still hope to get prego someday. But will I ever be healthy? I don't know what to do... and I went to the only non-religious book store in my region to find nothing but cookbooks. I am feeling very alone right now.

Jen

It is such a puzzle! Have you checked your chicken broth? And a lot of meats (chicken) are frozen in a chicken broth solution. My can opener was getting me, now I have two and they go in the dishwasher immediately after usuing. I also wonder about any preservaives or chemicals, are we more sensitive to them? I have been trying very hard since August, to be gluten free and it seems like I still get into it or maybe it is a reaction to healing? I get a little frustrated too, but happy not to have as many symptoms as I did 5 months ago.

[Gemini]

Hi again,

I'm relieved to report that the colonoscopy and endoscopy showed no abnormalities that the doc could see. He did take another duodenal biopsy. He definitely thinks I'm sneaking gluten. I'm happy that I don't have anything serious going on, but unhappy because the pain and all the D definitely wasn't in my head. And I already tried the elimination diet. When I was on rice, carrots, and chicken I still had D and pain. Same with when I replaced rice with sweet potatoes.

So tomorrow I'm making the calls on all of my lip balms to verify that they're gluten free (most of them have vit E), then I'm tossing any remaining items that may be suspicious unless the company confirms gluten-free status. I've gone off all of my supplements for over a week now and it hasn't helped (they all have clean ingredients and are marked free of gluten). So now I'm going to call the pharmecutical companies again to check the meds I've been taking. I've been working so hard to be gluten free, I just can't imagine that I brought this on myself.

I also bought two books on Amazon regarding celiac. Still can't believe that my local B&N didn't have anything on it but cookbooks.

Anyways, thanks for the support - any new ideas would definitely be appreciated! It's been a rough month.

Jen

Jen....I seriously think you should see an allergist or naturopath to be tested for other food allergies/intolerances. I think you are probably not getting any gluten because you are taking it seriously and being very careful. People really get hung up on the idea they are being glutened and then develop fears about eating.....as you mentioned yourself. It may take longer for some to heal but if you are not ingesting gluten, the pains should not be there. Your tTg might take awhile to come down but pain and discomfort should not be there, at this point. It really sounds like other foods are also giving you a problem. This is usually the point where people jump ship and go to see alternative docs because the medical profession will, indeed, think you are cheating. They only concentrate on one thing and that isn't going to help you.

The other issue with the still elevated tTg is other autoimmune problems can cause this. Hashimoto's thyroid, liver disease are but a few. I am not saying you have these additional problems but they are strongly associated with celiac disease and will elevate your tTg.

I hope you feel better soon....hang in there because it can test your patience.

[JRock]

Good evening all,

Another night in pain - I don't know what I'm doing wrong. My hubby thinks that sleeping with the cats on my bed may be a problem, and petting the dog. I'm very good about washing my hands. Another gluten-free day/week/month and I'm still in pain. I think Gemini is right - it must be something else. But how do you get a Dr. to test for something else? My doc seems quite set on the idea of me cheating - I must be a masochist! I stopped drinking for a week - no good (I have a Bard's Tale Beer here and there), did the whole simple diet, didn't help. I don't know what to do.

I feel like I've hit a brick wall and I'm begging for help but this doc that the base referred me to seems to think it all goes back to me being glutened. I'm going to look into gluten-free food for the animals - no idea how two cats at the foot of my bed would gluten me, but I suppose that's another possibility to eliminate. This is so frustrating. I'm keeping my chin up (my mom insists) and I've got a gluten-free list from Burt's Bees (all of my skin/hair care is wheat free, there are a few products that I'm learning the Vit-E sources from - waiting on responses and not using until I hear from them).

Tes - I don't use chicken broth - I use boullion that has to be refrigerated - but I rarely use it at all - no gluten ingredients! And my household is gluten free - I threw out any contaminated appliances months ago. This disease is costly

I'm in too much pain right now so I have to go, but thank you for the support - I really need it right now with my hubby gone.

Jen

[ravenwoodglass]

Good evening all,

Another night in pain - I don't know what I'm doing wrong. My hubby thinks that sleeping with the cats on my bed may be a problem, and petting the dog.

Jen do you feed them food with gluten in it? I had issues for months with mystery glutenings until I switched mine to a gluten free food. Check the pet food and litters.

[oceangirl]

Yes, check the pet food.

I have many animals and recently introduced a new puppy who is spreading his food all over the house and kissing everyone and I've been suffering from some mysterious glutenings. The dog food I use presently is gluten-lite, I think. But I think I might be getting it from somewhere in the dog food... (I, too, have cats all over our bed. They are gluten-free, too.)

It's just something else to eliminate. Please feel better soon- I hope you get to the bottom of this!

lisa