quincy

Darn it! I have had so many of these symptoms, why couldnl't I have the "loss of hair on legs" one??? A forst still grows

interesting. I posted a topic a few days ago asking if I had MS because I have experienced most of the symptoms for the autonomic system.

I have had bladder issues, reflux, no hair loss on legs but definitely brittle and ridged nails (toes mostly).

I really like my Celiac doctor but I have to admit something that really bothers me: I continue to experience these symptoms and when I ask my doctor

if it could be related, I am told no, because all of my antibody tests are now in the normal ranges.... Now, does that make any sense??? as if 40 years of being undiagnosed with celiac, suddenly all of my problems are gone with no residual or lasting damage in the nervous system etc.??

Just wondering if anyone else has a hidden worry of MS? by hidden I mean, you have things going on in your body, but you went undiagnosed with celiac so long

and complained to your doctor only to be branded a worrier or hypochondriac.

So my ttg antibodies have been negative for quite a while, but new problems have arisen since my diagnosis in april 2010. My hip bursitis has almost gone away, but now I have persisten muscle pain in my right calf, espeicially after being at rest and then standing up to walk. My last visit to my celiac doc I showed her my muscle fasciculation in my right arm which had been going on for several months. She contacted a neurologist and he felt it was benign. I was having muscle twitching in my finger, eyelid, then it moved to my right tricep.

Went to pulmonary doc due to bouts of bronchitis and now I am on an inhaler for some type of asthma I can't remember. I also have reflux/hearburn every day.

now I have epiditimytis!! and the inflammation continues after 3 weeks on levaquin. could all of these problems be related to neuropathy of some kind? the after effects of 40 years of undiagnosed celiac? Do I now need to go to a neurologist? OY!!!

any input from the forum would be appreciated....

I recently got the results back from a NMR LipoProfile which measures the number and size of the different LDL particles and HDL particles in your blood. My numbers are not good and it shows that my insulin resistance numbers are high leaving me at higher risk of diabetes.

If anyone is experienced with this, please provide input. for example, my LDL-P is 2204 which is very high (Labcorp's top number is >2000).

This concerns me and I will be meeting with my doctor to discuss but in the meantime any input will help.

I have heard the samething. Its really just such a high risk of cc due to all the bread products and the flour in the air that it just is not in their best interest for them to say it's gluten free.

The Panera by my house has a book that lists ingredients for each item on the list along with all the nutrition info similar to what would be on the label of a package. You could ask to see the ingredients for it, I usually due because I have a couple allergies and it's just easier for me to check. Just an idea if you really still want to eat there. I choose not too because of the high risk of cc.

thanks great info. will have to find out if my store does the mixing as well. I will also go in the back and see how the food line dishes out the salad ingredients. if they use the gloved hands that they have been handling all the bread then I am a no-show from now on.

Panera apparently has pulled their allergens menu. I went there yesterday and asked to see and was told there was no such thing.

spoke to the asst manager who told me I was confusing them with another restaurant. Finally after giving up and ordering a 2 dollar soda instead, another manager admitted that they used to have one but they pulled it due to inaccuracies.

anyone up on this issue?

also, am I crazy to even considering eating at a place called Panera BREAD?! I have had their salads before and don't seem to react badly, but maybe

I am being glutened quietly from cc?

Hello everyone! So I am almost 6 weeks gluten free.. I think I'm being pretty strict.. haven't eaten out once! but i'm sure i'm still making mistakes... I was just curious if the healing process with myself is similar to yalls?? It took almost 4 weeks before my bowel habits (sorry tmi) have almost normalized (from what they used to be).. Initially when this all started I lost 16lbs abruptly (I'm thin in the first place) and went from having one bowel movement a day to 15+ and I was eating everything in site (loooots of gluten filled cookies included) to gain weight! I have gained 9lbs back!!! My extreme hunger seems to be improving, still hungry a lot, but I don't feel like im starving to death anymore thank goodness! And bowel habits are back down to once a day or maybe twice ... How long did it take yall that had these symptoms to get back to "normal" or did you ever??

My Neuro symptoms (diagnosed as peripheral neuropathy with sensory and motor involvement- ? CIPD/guilliane barre possibility) I think are stablizing.. I'm not longer waking up at night with the "dead" arms and legs sensations.. I am tingling more.. which is an improvement from total numbness.. and at times I feel my montor function MAY be better.. but I don't think worse.... (the neuro stuff all got worse the week i went gluten free) My mind is still completely frazzled (mostly from all the emotional trauma of the possibilities of the neuro stuff being something worse!!!!

Anyhow, I was just curious how this all measured up to everyone elses experience! Thanks!!!

gluten free since April 2010. Gastro systems took months to calm down, maybe 7 or 8 bm's a day not too bad considering. ataxia took about 3 months to finally go away. Even gluten free cereals made me sick so be patient. stay away from dairy for awhile if you can.

doing much better now, back on low fat dairy such as greek yogurt and grass fed milk, eating and tolerating wild salmon etc. eating out is very trickly due to cross contamination. Dont trust them even when they say its gluten free, unless its PF Changs or Outback, they are the 2 major chains that seem to have it down correctly.

be patient takes alot of time to heal from my experience but I was 48 when dx'd so was on gluten all my life

Costochondritis - inflammation of the cartilage in the ribcage. One of the charming symptoms of sero negative arthritis along with the sjogren's and the tendonitis.

I don't get it as much now, but it's one of those oh just let me die now sort of things if it coincides with a chest cold and asthma or if you sustain an accidental impact to the ribs.

this is interesting I was not aware of inflammation of the cartilage but I experienced this up to and after my dx in april 2010.

I thought I had gall bladder disease because the pain first appeared on the upper right and then radiated around the back of the right rib cage. Turns out I also had osteopenia so I wonder if that was also causing the aching. I also have right hip pain and inflammation of the hip joint but this too has subsided alot since going gluten free.

I just found out I have celiac three days ago. All the information and restrictions have been overwhelming. I was hoping to get some advice from those who have had it for longer than a few days. Im a 21 yr old college senior so my life is very on the go. So far i have struggled with finding things that I can eat that are on the go...any tips or advice about anything will be much appreciated.

Thanks everyone

a snack that I have recently discovered that is wheat/gluten free and has a healthy list of ingredients is the snack bars

called Kind. I love the ones that have almonds, cashews, and fruit with flax seeds. If you go to starbucks you may have seen them at the counter where you buy your coffee. They have a variety of flavors. I live in NY and recently bought one for 1.25 but I know that most places sell them for up to 1.99 a bar.

I was very bold today. I went off dairy when I was diagnosed, and my doctor suggested trying it again at the six month mark (beginning of October). I would get horrible stomach contractions and cramps from dairy products with even low lactose levels like yogurt and aged cheeses, so I was hoping that I wasn't casein intolerant, too. But I've occasionally had small amounts of other foods with low lactose levels that my doctor okayed and I've felt fine (butter when making cookies, dark chocolate and chocolate chips), but I haven't had any hard dairy products...before now.

Anyway, my mother was in town and left an extra greek yogurt in the fridge when she left....it's been five months, and my ttg levels have gone down rapidly, so I figured I'd give it a shot. It felt as though my stomach recognized that I ate something that I don't normally eat, but I didn't feel bad - no crippling stomach cramps or pain! Woohoo!

I still think my body needs a little more time to heal so I won't be having dairy all the time, but it's so nice that I didn't get sick. Maybe I'll try gluten-free pizza soon!

Just wanted to share. Gotta count every small victory

I am also happy to say that I have successfully started to enjoy dairy again and its been over a year. I like almond milk but tea, coffee and cereal (gluten-free of course) just didn't taste the same. I have at least been buying organic, grass-fed, non-homogenized from the local organic store. I can't be happier, I feel like I am regaining a part of my life that I lost for the last 18 months. I also tried my first gluten-free pizza with real cheese and it was fantastic,

for all of you out there that are still struggling with the major part of your healing, be encouraged because I was there where you are now and I was miserable and it seems like you will never get better, but I made it through!!!! yeah! and so can you!!!`

My vitamin D deficiency was detected Jan. 2009 and it was at 17. I have been taking 50,000 iu weekly since. My last level was 60.

thats great progress Roda, are you on maintenance now? if so, what are you taking daily?

The Doctor had me on 50,000 IU a week, and then I was supposed to take 1,000 a day on top of that. That seemed excessive to me so I backed off of the 50,000 a week, and now the symptoms are returning. A doctor has to monitor it, and unfortunately I don't have health insurance. So, I take 2,000 a day. Hopefully it will work itself out!

when I was first diagnosed and found out my Vit D was 16, I went to an Endocrinologist and she wanted to put me on 100,000 IU's a week immediately.

well I too balked at those amounts and went against her instructions and just did the 50,000 once a week. well as I said earlier, by the end of the summer

I dropped to 11. After several more months I climed to 18 and then to 23. Finally, my celiac doctor up'd me to 100k a week so I realized that the Endocrinologist was correct all along.

The bone pain subsided with each time I took the dose. Some bone pain has returned to my right hip so I can tell I need to be consistent after dropping off from taking my 2,000 IU's a day now... so be vigilant and don't second guess your doctor with dosages with very low Vit D.

also, I don't know what doctor would not prescribe the vit D if your levels are very low. taking an OTC supp of 2000 a day with very low levels will not get you to where you need to be and in the meantime your bones could be losing density.... not to be an alarmist, but after years of lifting weights, to find out I had osteopenia, I don't mess with what the doctor tells me, IMHO

I am curious as to how many of us have Vitamin D defiencies. Mine was severe, and I struggle to raise my count, and have been all year. Anyone else?

My first reading was 16, then after a few months on 50,000 IU's and a full summer of sun it dropped to 11 !!! So my doctor put me on 50,000 IU's twice a week for 3 months

and it finally, after a year of trying, went to 52. It took a year of healing and persistence with the supplement to get my numbers up. and I have osteopenia. I go to the Celiac Disease Center at Columbia University by the way so my doc is a celiac specialist....

take your vit D level very seriously, and its best to take your supplement w some type of healthy fat, either a salad with some olive oil or a almond butter etc.

Thanks for the reply. The ultrasound was for lower abdominal pressure. Nothing was found. Today I started gluten free and already the bathroom visits and gas are decreased. Pressure has quieted down also. I will try this for a while and see what changes.

Peg

actually, now that you mention lower abdominal pressure, that is how my symptoms first presented. The pressure was

exerting on the bladder so I went to a urologist who did ct scan and nothing unusual was found. Celiac disease can cause swelling pain and distention in the abdomen so if you do have celiac these kinds of symptoms are very common.

but before you start a gluten free diet it would be wise to have a blood test now because you should confirm a diagnosis as gluten exposure will raise your antibodies.

I am just beginning to think this is where I need to be. Would someone please describe to me how you felt just before you were diagnosed? What symptoms brought you to the doctor?

I have an ultrasound cooking. Waiting for results but my gut (ha ha) feeling is Celiac or at least gluten intolerance.

Thank you.

Peg

Hi Peg,

welcome to the forum. I was diagnosed with Celiac through biopsy via Endoscopy. I had suspected Gall Bladder disease or a possible ulcer due to pain in the upper right quadrant. I was surprised when the diagnosis came back with celiac.

My only indications of celiac were an increase in bathroom visits beyond my normal bodily schedule. Other symptoms that were involved were nausea, anxiety, panic attacks and rib cage pain from bone loss.

as to your ultrasound, what is your doctor looking for with that procedure. Duodenal biopsy will reveal villi damage and determine if you have antibodies indicative of celiac, in addition to the blood test.

any questions, just post. hope this helps.

Hi all, Thanks to anyone willing to tackle this. Just diagnosed 3 wks ago (I'm 45), likely this has been going on since childhood

I have recurring nightmares that I have accidentally eaten gluten. Then I try to puke it back up to get it out of me. It is so awful. Does anyone else experience this? Ugh I hate it. I hate this whole thing. Why can't it at least leave me alone in my sleep?

I had those dreams once a week, at least, for my first year after dx. I am now early into my second year since dx, and I don't have that dream much any longer. I think my fear level has gone down alot since my symptoms have gotten down to almost nothing anymore. all the shock that my body was in I think is calming down. I accidentally consumed gluten from some Edy's ice cream yesterday and I was initially freaked out like in my dreams, but I waited for the pain and I was lucky I dodged that bullet of gut pain.... wow. so maybe I am getting alot better and can withstand a minor exposure? I just drank alot of water. So the fear factor has lessened alot.

I have been gluten free and dairy free (except for 1-2 small reactions) for 2 months now. I absolutely feel better. My stomach bloating, aching, itchy legs, tongue issues, constipation, gas has almost all improved 100%. However, I am having almost daily headaches and joint pain. ESPECIALLY MY SHOULDERS! My shoulders ache. Moreso at night time (when laying on them of course)I think it is from the dairy but I cannot be certain.

I'm wondering what withdrawal symptoms you guys are having, if any? and how long does it take to be free of these issues? (I can't even do shoulder exercises because they are so sore- sorry I'm a gym rat).

Also, what improvements have you all experienced since going gluten-free/DF? Even the small ones. Sometimes it is nice to read the good stuff that us healers can look forward to!

:-)

my main withdrawal symptoms were nausea, dizziness, and terrible terrible anxiety. I had constant pain in my ribs on the right side and could not sleep on my right side, it felt like my intestines were going to "spill" out of me, sorry for the TMI.

hand in there. it will get better, though the healing of your gut may take time if you have celiac damage...

does anyone have any ideas for what i can do help this out,thanks again this is a great place for info if your new on the block. sorry for the double post.

I have had "blonde" stools for awhile. I took one of these digestive functions test using stool analysis and it showed I have no detectable bile acids in the stool.

Typically too much bile acid in stool is not a good thing, but there should be some detectable amounts.

my nutritional doctor said that only a HIDA scan can test to see if your gallbladder is contracting enough bile salts to aid in the digestion of fat and protein. If your "ejection fraction" as they call it is below 50 per cent then you could have a non performing or malfunctioning gallbladder. Sonograms of the liver and gallbladder are not a functional test, they just tell you if the organ itself looks normal.

My nutrionist suggested that I squeeze a lemon wedge into hot water every morning to get my gallbladder going. I am also taking a digestive enzyme with bile salts and HCL. In addition I take a liver and gallbladder supplement that contains beet extracts and milk thistle. Adding beets to your diet is a great way to cleanse the liver etc.

just some ideas if any of it helps...

This is so frustrating. Everything i eat is bothering me and I'm on a bland clean diet. I feel like I'm back to the old withdrawal days when I first went gluten free and my gut was a disaster.

I thought I was past all this and here I am with a messed up gut again. So frustrated.

The bloat is the worst. I look pregnant and it makes me not want to leave the house.

well you are not alone and i completely relate to your frustration. I have had a set back too after doing so well. My attack of colitis is subsiding but it has been slow getting back to normal

I got diverticulitis from a Glutening and needed antibiotics. Hope you feel better soon. Most people don;t have a clue what Coeliac can do to our bodies.

I just went through this as well. I suspect the colitis was from a glutening. It started with pain on the lower left side which they thought was diverticulits. Cat scan showed colitis and diverticular change from my scan from 2 years ago.

how did your pain present itself sandsurfgirl? going for colonoscopy in June

Hi! I'm also the patient of Dr. Tennyson at Columbia University in New York. I had the hydrogen breath test for bacterial overgrowth and also for fructose intolerance. Both were positive.

For lactose intolerance I need to avoid fruit high in fructose, honey, any fruit syrup, jelly, dry fruit.

For SIBO Dr. Tennyson prescribed for me two antibiotics. I was taking them in the morning and evening for two weeks. The technician knew after two hours that I was reacting badly to the liquid they gave me to drink and she didn't even finished all test. After that I had one more time the test for SIBO done and it was negative.

I didn't ask for the lactose intolerance test because I knew that I was intolerant already. When I ate yogurt or had a cup of milk, I had BM from 15 - 30 minutes. Some times I had even D. Later I found out that I had allergy to casein. If you want to know more, ask me.

who tested you for casein? was it by blood test or stool?

My husband has had alot of stomach problems for over 10 years. He has seen many doctors and been told many different theories. Mainly stating that he has IBS but we have concluded that his symtoms are just much worse and nothing helps. In the last year it has gotten really bad and has even started to cause panic attacks. We read about celiac disease and have decided to start a gluten free diet. How long before we could know if being gluten free has helped?

I assume that in all those years and all those theories, not ONE doctor ever thought to give him a celiac blood test? If true, it never ceases to amaze me....

If he has been sick all these years and panic attacks have set in (that was my first symptom) IMHO go for celiac blood work and/or endoscopy before you start the gluten-free diet just to see if he has any damage to small intestine.

It is possible you are still getting trace amounts. What are you typically eating? Have you eliminated gluten from topical items? Have you checked all meds and supplements? And the most important IMHO is how are you feeling?

I don't know how high your readings were to begin with but if they were very high and have been steadily coming down, you are very careful with your diet and topicals and are not having any symptoms then it may just be that your system is taking a long time to clear gluten antibodies. I don't know for sure how long it takes for all tests to be in low ranges and it may be an individual thing. Have you have had a few accidental injestions? I think that might keep them a bit into the higher ranges also.

my december 10 readings in the same order as above were:

deamidated IgA: 16

deamidated IgG: 59

tTG: 3

my first tTG was a 51 back in april 2010, so yes I have gone steadily down. I may have had several accidental ingestions but they would have been in small quantity. I have to make a list of everything that I think might be suspect. I also am going to call all of my medicine companies to double check and triple check that they are gluten free... some of these generic companies I worry about...

My numbers have steadily gone down since going gluten-free. Here are my blood results:

Deamidated Gliadin Abs, IgA: 15 Negative range

Deamidated Gliadin Abs, IgG: 33 High (moderate to strong positive)

t-Transglutaminase (tTG) IgA: <2

so my question is: Am I still getting hidden gluten somewhere because the IgG reading is still high?

HiQuincy, yep pain is in LLQ as u described, just south of rib cage , yet a bit higher than belly button

I had colonoscopy, endoscopy and pill cam in4Q of 2010,just before it was determined I had

Celiac. The ct scan was about a month after I had complained of the pain.

Recently the GI doc suggested a spinal MRI since spinal nerve endings can show up in the gut.

Time will tell,I guess?

so you have been through alot of tests. so they are suggesting that you are getting referred pain from the spine? but no back pain? I have been pain free for the past week now, thank God. Have you had stool analysis to make sure your digestive and pancreatic enzymes are properly breaking down the fats and carbs etc?