quincy

Hi Quincy,

I used to eat a lot of hummus myself. I have dome several elimination diets over the years and the garbanzo beans were a problem for me. I have tried them a few times since then but no go. Actually I don't eat any kind of beans very often anymore. I always consider beans an experiment now, not something that I expect will be ok for sure.

My CT scan showed "thickening" of the large intestine? this is the first time I have had a ct scan performed since being diagnosed so this might not be something new but was there all along? I have been gluten-free for year w gut pain on and off but lately off until I started adding some new things to my diet and new products. so perhaps I was gluten'ed. have an outbreak of canker sores right now too..... hmmmm. anyone have a ct scan that said 'thickening" of large colon without it being something horrible to deal with? maybe I should introduce it as new thread....

I had a colonoscopy first and everything was good but I had a spot that looked bruised so the took a tissue sample and it can back ok. Since I still had the pain he did a CT scan and said I had some thinking of the colon and he thought is was colitis and started me on some medication which did not help so he sent me to a GI doctor for a second opinion so the GI doctor did a Sigmoidoscopy which took some more tissue which came back fine also and said I did not have colitis so he had me do a small bowel follow-through which came back fine and said the pain had to be from the celiac disease and once it healed all the way it would go away. I'm not sure that I believe him because I have had stomach problems for a couple of years and the pain just came up in December of last year usual I just had D.

well interesting, they told me the same thing. that I had "thickening" of the colon that transverses the abdomen from the liver to the left side with a few small pockets on the left. But my GP couldn't say what was causing it, maybe colitis, crohns or c diff.... anyone else have any thoughts on this or have gone through this? at first when I was told thickening of the colon, I was a bit freaked. I thought I was on the mend from celiac, but it has only been a year and I think maybe I have forced too many complicated foods at myself too soon, raw veggies, smoothies with veggies, too many beans etc.

any thoughts please chime in!!!

Previous thread if you want to view my story and list of symptoms-

Hello everyone, just stopping by to give a status update on my symptoms. I had been gluten free for almost 2 months then I thought I'd try gluten for a week to solidify my self diagnosis of Celiac. 5 days in I went back to gluten free, my upper abdomen hurt more and more every meal that I had bread with. Also severe fatigue was setting in and the muscle twitching came back, my whole bicep would just sit there bouncing involuntarily. It has been 3+ weeks since I started the gluten free diet again and my muscle twitches are almost gone completely(my calf or shoulder might twitch every once in awhile). I started exercising again with light weights and cardio until I felt comfortable enough to try a vigorous workout. Before my self diagnosis when I would try to workout I would almost faint and afterwards my body would shake uncontrollably and it would take almost a week before I could even attempt to exercise again. Also I have cut my blood pressure medication down to once per day in the morning(I have low blood pressure) because my blood pressure is somewhat normal in the evening now. My GI symptoms have also improved, I haven't had constipation or other GI ailments since going gluten free. The main neurological symptoms that I have noticed clearing up is the brain fog and my difficulty finding words while talking.

Again my diagnosis is only a self diagnosis, so I would like any opinions regarding the clearing up of symptoms and if this is typical of recovery from a gluten free diet. I also might request my medical records if anyone wanted to interpret the tests I've had done. The one thing I remember from my last round of tests was my cholesterol levels. My LDL and HDL totaled 62, which is apparently another sign of celiac due to lack of fat absorption from the damaged small intestine.

It can't hurt to get a confirmation by blood test to see where your antibody levels are. all your symptoms sound familiar. I just found out a year ago and learned that I was pre-osteoperosis due to lack of vit d and calcium. having your vitamin levels checkd through blood test is a good idea too. it gives you a baseline of what supplements you should be taking. heal well!

I eat the Food Should Taste Good chips and have no problem with them. But they do make some chips that are not gluten-free, so watch the ingredients. I only eat the olive chip and sweet potato chips myself, because they are GFCFSF. I think the multigrain chips are just that, and not safe for us. But I avoid soy so may have excluded them for that.

Otherwise the colonoscopy prep sounds like so much fun!

thanks Paul, I was just eating some of the sweet potato chips last night, despite going through D from hell all day yesterday. by the way, i notice in your profile you mention the garbanzo beans of pain. may I ask why? I was practically living on my homemade hummus recently, but wasn't feeling so great after a while with it. any reasons why?

Note that glucose derived from wheat is safe to eat. Thank goodness!

I used this site as my second bible once i found out a year ago yesterday. I also google everything "is 'this product' gluten free" and usually many hits from this site come up and you will get your answer. if you have an iPhone or smart phone there are some apps out there as well.

when shopping you can also check for the 'certified gluten free' label which comes from cgf.org. I always feel safer when i see that, but I STILL google the product with the question if it is glutenfree, just in case there are any controversies about it.

I have thought about the second opinion but I think I'm going to wait until my follow up in July. I had another blood test last week and it still shows that my antibodys are still up a little bit but have come way down so I also need to find out where I'm getting the gluten from. The GI doc said it is the celiac disease that is causing the pain and that it should go away once I get my antibodys to nromal.

I just went through a ct scan for lower left pain. my gp said it was diverticulitis though I had no fever. my friend has diverticulitis and doesn't get fevers so that could be a possibility?

Hi, I'm pretty new to the gluten-free world. I quit eating bread and pasta (& etc.) early April, and yesterday I caved: I ate several slices of yummy bread.

Well, today I'm having severe bone and joint pain (back, arms, legs). Could it be a reaction? I am still as constipated as ever, but a bit more bloated and gassy.

I cheated because I felt like my life without gluten was not much different than on it: I'm still extremely tired most of the time, I can barely function.

How long does it take for the gluten to be completely out of one's system?

Each person is different. It sounds like your reaction is not good. have you had a blood test to see if you are celiac or gluten sensitive?

No, you are Not a coward at all!! Many people on here say they felt this same way...I have said the words, I'd rather be dead than live like this!! many times during the last 4 years....I did not really mean it because I fought hard to get well. I have excruciating muscles/joint/bone pain, my hair fell out, I felt crazed in my head... and dozens of other symptoms...and I just would not give up.

Do not give in. You are healing now and you will feel better. Hang in there, Nate!!

Hey Nate, I have been there and it has been hell for me this past year. the first 6 months were the worst for me too. I woke up every morning with the worst feeling ever. I had to take .5 mg of klonapin just to get through the nausea and the anxiety so I could go about the day.

I felt great in the sixth month. My mother is Italian and she tried to be supportive but she did not grasp what was really happening to me. It is hard to go through all your life suffering from something that finally has a name....

but you will get better and you will not be the same but you will be good all the same.

I have had to just turn people down when they offer me food.If I don't prepare it or someone who is gluten-free doesnt prepare it then I dont eat it. I had to be that way for awhile. when you let down your guard is when you pay the price and its not worth it.. take care of yourself first brother!

I also had a liver scan six months after the abdominal CT scan and I had a different contrast (can't remember the name) but it was gluten-free. And yes, they did add Crystal Light to it. Yuck! I hate Crystal Light on a good day. Do you have a problem with artificial sweetners? I just intensely dislike the taste of them but don't have a problem otherwise.

I've not used Silk almond milk or Food Should Taste Good chips so can't answer that. My dental hygientist gave me a sample of Sensodyne ProNamel toothpaste, which I googled and it is gluten-free (might have a CYA statement). I tried the sample but then went back to my usual Colgate. You might want to drop it and the new foods for a bit to see if that helps. Sorry I can't be of more help.

I cant stand artificial sweeteners no. and that drink was awful and it came out awful too! TMI sorry.

I stopped the silk drink and the toothpaste for now.

thanks so much for your feedback.

The contrast I had for my abdominal CT scan was Volumen and it is gluten-free (it was nasty stuff though and I was basically choking it down by the time I got to the last bottle). I lived in the bathroom the rest of the day so I think that's pretty normal. I don't recall if the D continued the next day. Hope you feel better soon and that the results of your scan are good, too.

thanks Sylvia, that ct scan drink was rough and I will have to call them back to find out it was gluten free. the woman said it was crystal light mixed with whatever they use.....so not sure.

I had to have a c diff test also to rule that out. I think I am being glutened without knowing. I have canker sore in mouth right now.

new products using are: Silk Vanilla Almond drink, Sensodyne Pro Namel toothepast, and Food Should Taste So Good chips... any thoughts on these items?

Yea my doctor was really amazed also. With the first scope they were throughout my entire large intestine but the scope I had done a couple of years after diagnosis showed only a few in the normal area on the left.

Do make sure to have the lab check and make sure that anything they give you for the CT is gluten-free. The liquid you drink will have a thin consistency most times if it is. It helps if the doctor writes gluten-free contrast on the lab slip. As for the scope also check with the maker to insure that the prep is gluten-free. With the one I used the maker told me not to use the flavoring. Usually the prep isn't painful but you will be spending a lot of time in the bathroom that day so have lots of reading material available. I have twisted intestines, likely from the force of my gluten reactions during a challenge prediagnosis, so they do now put me out completely for scopes. The one I had before my intestines twisted was not difficult at all though. It is likely that you will not remember anything about it as even without full anesthesia you will be quite 'out' from the twilight drugs. As the other poster said you will be encouraged to pass gas in the recovery room. They wouldn't let me go home until the nurses heard me pass so don't be embarrassed if tell you that. Almost everyone has a really easy time with the scope although the prep is a bit time consuming.

OMG the watery D is awful. They gave me the drink and I specified that I had to be gluten free but now I dont know if it was or not! THe watery d started yesterday though, but today its worse.

now the doc wants to check for c diff? after all my posts on here I am still a newbie when it comes to all these tests!! I am praying the ct scan doesnt show something awful. oh man my anxiety has been through the roof.

so it sounds like major d is normal after the ct scan?

It is quite possible it was a glutening. Your doctor could tell you with a colonoscopy if you have diverticulitis. That usually presents with a high fever and many have to be hospitalized with it as the symptoms are severe. He gave you some pretty heavy antibiotics so do be sure to get some probiotics in you if you tolerate them.

I have both celiac and had extensive diverticulosis (GI said it was the most extensive he had ever seen) but after being gluten free for a couple years the diverticuli had mostly disappeared when they did my routine over 50 scope. My doctor told me they no longer feel we need to avoid seeds and such but other doctors may still feel differently.

thanks so much for that response. The reason I was alarmed was that the pain was lower left and usually my glutening results in the typical (for me) ache on my right side. But funny the pain on the left is gone and now I have the tell-tale ache on the right.

it is amazing that you say the diverticuli went away! I am supposed to go for a ct scan and then my first colonoscopy at 50 in a few weeks. I must admit I am a bit nervous about that event.... any comforting words of wisdom on that? thanks

This is my one year anniversary since dx in April 2010. Everything has been going well, my antibodies are negative, my bm normal. THen I ate this easter candy I thought was ok but I misread the label and the one I ate was made on equipment with wheat.

woke up next morning with "stitches" on my lower left abdomen. something I have never had before. it was sore and tender. Doc said its sounded like diverticulitis and put me on Levaquin and Flagyl. Now the D has started and yuck, I thought I was over all of this.

so could it be the popcorn I started eating again which caused the abscess or glutening. If anyone reading has gone through celiac and diverticulitis please chime in. I gotta go for a ct scan now...

Hi everyone,

Does anyone know how long it takes for our intestinal villi to regain the ability to absorb nutrients again?

The other day my G.I told me that he's sure my villi are all "standing upright" again.

This was simply an office visit - the G.I didn't scope me again or order new blood work. He said he believes this because I've been gluten free for a month.

During my Gluten-free month I'm fairly sure I've encountered cross contamination at work. Moreover, I still have chronic rib cage pain, fatigue and a bit of brain fog...

It would be really great news if I'm absorbing again - guess I'm just reluctant to believe it, given my ongoing issues.

Any thoughts?

Best,

Pondy

I had chronic rib cage pain which could have been from the swelling in my intestine or from the Osteopenia. I am coming up on my year anniversary next week and I can say I have made progress but I don't know how your doctor could makes such a statement after a month gluten-free and no scope to confirm.

If I were to take my slow progress in Vitamin D absorption based on my interval blood tests I would say that the recovery of my absorption has improved but is slow. I am now 49.

my vit d level started at 11 in September, then 18 in November, and most recently it was 23. And 32 is the minimum normal with LabCorp's scale!! So when I get to 32 I will start to believe that my absorption has started to really gain ground. This may be a faulty marker on my part but it would seem to make sense.

Pondy, have you had a bone density test done? your ribcage pain could be sign of bone loss or the fact that your small intestine are still swollen?

Hey guys! I've been having REALLY vivid dreams of me being pregnant, and having children, and I've also had a few where I'm being chased by murderers! ever since I've been diagnosed.

I literally wake up every morning exhausted by these dreams, does anyone else have really weird dreams?

THANKS

I have had those dreams all my life too from early childhood into adulthood. My crazy dreamlife just started up again after dx last april. Now my nightmares are of forgetting I cannot eat gluten and freaking out after eating a bowl of pasta or a slice of pizza and then realizing in horror what I had done. I usually collapse in the dream overwhelmed by fear of the gluten reaction.... argh... hang in. its good to talk to someone about it if they continue.

I hear you on the beer front. My older brother (who I suspect has it too) was shocked when I told him I had celiac along with our younger brother. When I told him it meant no more beer, he responded with, "(Expletive)! There's no way I'm getting tested then!"

RedBridge isn't bad as far as gluten-free beers go. My brother and 2 sisters refuse to get tested even though I was dx'd in April and they all have various symptoms. My older brother passed away from Type 1 Diabetes and I strongly believe now that he was an undiagnosed celiac. My younger brother has had unexplained seizures since a child. The doctors just declared that he had epilepsy without ever finding the area in his brain that was causing the problems. I have sent them so much info and they STILL refuse to get tested so go figure.

oh and btw, I was always labeled the whiner too. I was always sick as a kid, now I know why... thanks for the thread.

The last 2 times I got CCed I had what I would have to call an anxiety attack that occurred with my usual glutenated symptoms. This is new to me and I do not like it at all. I felt like my fight or flight response was activated despite having nothing to fight or fly from. Any suggestions how to work through the anxiety?

Gluten anxiety for me was the worst thing I have ever gone through in my life. I was having panic attacks in my sleep. I called 911 twice thinking it was a heart attack. In addition, after going gluten free the anxiety got worse because I developed ataxia and it gives you the feeling, literally, that you are spinning out of control. so horrible.

after initially having difficulties with the re-bound anxiety that xanax causes, my doc convinced me that klonapin was a better alternative. I used the wafers that dissolve on your tongue and I also use the .25 strength. if the bout is bad I take .5 But I am so happy to say that with my gluten-free living and the vitamin D and b vitamins I take daily, I rarely need the wafers any longer.

but I would highly recommend the klonapin until you get your vitamin levels up again. B6 apparently is the most important component to the calming effect that you lack right now, so lots of green veggies and also omega 3's will help restore your mental/physical state.

oh I also agree that after I was able to recognize my symptoms, jumping jacks or something immediately physical was able to get me through the initial part of the panic attack, or at least until the klonapin took effect. running or jumping or just jumping around will relieve that flight instinct because your body is in a state of hyper alert from the gluten effect.

Did it come out on the gluten free plate?

It's unfortunate that they gave you the runaround. I once got a noodle in a takeout order from there. I called the restaurant and the manager was very apologetic and refunded my money for that entree and even sent out a $10 gift card. I said not to, because I was calling to inform them and not to get money, but she insisted. You might send a letter through their website. As far as I can tell, PF Chang's is really dedicated to having a gluten free menu, and I think corporate would be interested in the fact that they are not being responsive to your complaints. Good luck.

Thanks for responding. I cannot confirm for sure that it was PF Chang that glutened me. It was the only place I had eaten that day however. It did come out on the PF Chang plate so something major would have had to go wrong. I work with someone who waitresses there at a different location and I will ask her if it is possible that there could have been a mix up in the kitchen.

I love eating there and will continue to eat there. I will just double check with the server as I used to do until I got very comfortable there. My post is not to bash them at all, just curious if it could have been there that I got sick.

I love PF CHangs; it's the only place I have never had a problem, until this past Monday. I ordered the beef with broccoli lunch bowl and the egg drop soup. I noticed that the sauce was quite good, and tasted "better" than usual. within a short time I began to get my tell-tale pain under my right rib cage. I can definitely tell my right intestine is tender and swollen and the pain goes down to the lower part of my abdomen on the right.

I called the restaurant to ask if perhaps the cook could have used he wrong sauce and the manager said the gluten-free food comes from a different window so that was not possible. . But I am certain it was that meal because my reaction is soon after ingesting gluten, not a day's delay. I wonder how much I can trust the staff to not make mistakes?

anyone else have a negative experience there? I will continue to dine there but I have been uncomfortable the last few days

Seriously, every single person i meet or hear about w/ a gluten intolerance is female. I feel like the only guy who has it...why?

That's an interesting point, though I am a male with Celiac. I go to a celiac support group in New Jersey and

there are a good number of men there, though definitely outnumbered by the females. Part of the danger for guys is that they will ignore their symptoms for many years until it gets to the point where they have no choice. I did not do that myself, and to top it off, my GP kept telling me the discomfort under my ribs was a pulled muscle from working out... so lame. SO you are not alone!

I took Norvasc for years--it's definitely gluten-free. When my insurance company pharmacy switched me to the generic, I had a terrible allergic reaction.

I now take Lisinopril (not a Calcium Channel Blocker).

I am also taking Norvasc since the summer. It took a month or so to adjust but I have had decent results so far. I switched to the generic and I made sure the generic company pharmacy dept checked for gluten and they told me it was gluten free. I can check the name of the generic company and post back again later.

as an aside, has anyone had any gum problems from Norvasc? I read in from several posts on the internet from people who were told by a Periodontist that they developed gingivitis from the norvasc. I noticed some gum and plaque buildup lately more than usual. a reddish appearance to the tartar/plaque (whichever it is!)

So I've been diagnosed with celiac for 3 weeks, and all my symptoms have seemed to get worse since I've been gluten free,

is this normal?

Yes. I was dx'd in April and got worse after that. My advice it to stay away from milk and dairy for awhile depending on what level damage you have to the brush border of your small intestine. I wound up getting used to the Pacific brand of their Almond drink. at first it is just awful but I have gotten quite used to it now and it satisfies my milk cravings.

but sorry to say, all my symptoms got worse for several weeks after going gluten free. Just because you stop ingesting gluten doesnt mean your intestines are healed and the toxins will leave your system immediately. it takes time to repair, but you WILL get there!!

i have been gluten free for about 6 days and i am experiencing tremendous anxiety. has anyone experienced this? is this a detox symptom?

it won't go away.

Thanks much,

Mamie

I went through a terrible period of anxiety leading up to my dx and for months afterward. I had to take meds for it.

Low B6, folic acid, and Vitamin D are contributing factors so make sure you get all of your levels checked so you have a better idea as to where you stand. Essential fatty acids that you get from fish oil etc are also key to healthy brain function. as your absorption increases, your anxiety should start to abate. Heal well and soon!

My TTG was 51 in April 10. My last reading as of Dec 2nd was a 4. So it sounds like going from 171 to 34 is quite good in 4 mos. It takes time for the numbers to go down but if you are very strict about gluten it will come down to negative soon.

dairy does not affect the ttg number, its just that dairy is not digestible if you have villi damage, which most likely you do. stay off dairy for a good while, and then start with lactaid in tea or coffee and see how you do.

I love the almond milk too. I tried coconut and I don't like it at all. Almond is much better.

yes agree. I drink the Pacific brand almond milk, its much less expensive at Trader Joe's. Tried the coconut milk too... yuck and the D was terrible... go almond!!