nettiebeads

I did get some gluten a few days ago and it didnt bother me so I thougt man it didnt hurt so maybe they are wrong or maybe if I only have a little bit it doesnt matter. I have never made it to my dr yet. my work schedule has not allowed it. I also have been eating cereal with malt. So I am not gluten free at all. so tell me something if anyone know. I was really really sick. I mean horribly sick. and I am alot beter now. But if I am still getting gluten then why do I feel better? Is it because I am only getting a small amount instead of a major amout?

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Everybody reacts differently, and as time goes by, I'm finding out I react differently, depending on type/severity of gluten. I finally gave up my cereal with malt for flavoring, and I'm feeling better than I have in ages. But had a dining disaster at a seminar three weeks ago, and ended up with D almost right off the bat, and that had never happened to me before. Then this week I'm sure I got glutened, but didn't have any of the severe abdominal problems, just majorly depressed - I mean really weirded out. And of course the fatigue. But I'm getting better again rather quickly. I think that by maintaining ingestion of gluten you aren't getting as healed as you could be. Wouldn't you rather be 100% better? And no one knows just how much damage is being done until too late. I seem to have a slight neurapathy problem, but maybe that will heal in time too. I'm mad at myself for ignoring the word "malt" in so many things, I only have myself to blame for the numbness that I have now.

hello:

I was just wondering if anyone has noticed if this disease at your weak moments has made your tolerance to stress and tension less

Ive noticed throughout my ilness ive become less and less able to handle tough situations my first reaction is to run!

I never use to be like this my family and prior jobs has put me in worse positioins than i'm in now  i didn't do a bad job and handleing it  (i think anyways) now even little things like my brother and sister arguing put me in a really bad place i can't handle it at all... i can't even handle people raising their voices or even telling me bad/ negative things

even loud bangs and such have a bad effect on me

thanks for listening yet again

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Yes, stress and celiac disease do not go together well at all! Just got over a mild glutening myself this week - and the emotional toll was way worse than the physical this time. It is very common with celiac disease. I felt like I'was the most horrible person in the world, why did I bother living.... What saved me this time was reconizing that I did have a glutening, had been through it before, and just to grit my teeth and hold on until it passed. Which mercifully was rather short. Way back when, when I was first dx'd, I was completely out of control. I do feel bad about the way I acted then, but I honestly didn't know what was happening. I'm now so very gluten-free, the house is practically gluten-free (husband isn't and has to have his bread, but that's about it). Give yourself time. As you heal, the mood swings will pass and you will feel like your real self again. Can't promise you a time line, but it will happen.

Hey!

well I'm back from the GI's office and I got the dreaded diagnosis I walked in and he said "Danijela your Barium Enema can back completly normal you have Irritable bowel syndrome are you familiar with this?

I cringed when he said that....

I asked him about getting tested for food intolerances and he said he didn't do that and I would have to go to an allergist...

so my question is: is an intolerance and an allergy the same thing? i didn't think so....

I gave my gp the list of antibodies that I should have tested that I got off of this site and he said he was going to look into it (i'm not sure if he knew what it was)

I haven't heard back yet and the GI said he doesn't deal with those sort of issues....

so i don't know what to do next I dont' want to go gluten-free until I find out if their going to run the tests of not to prevent a false negative...

The news station we have here ran a little 5 min special on celiac disease it was just a specialist talking he said that celiac disease was a hereditary  disease that one gets when they are a baby and they also suffer from extreme weight loss...so now my family is convinced this is all in my head because i'm  a few days short of 22 no one in my family had celiac disease and I have gained weight ....

so i don't know now what to do??????????

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I'm so sorry to hear that you haven't had a def answer yet. IBS is a syndrom based on ruling out other things. So far the celiac disease hasn't been ruled out so IBS can't be definitly ruled in. And tell your family (or let them read this) that NO ONE ELSE IN MY FAMILY HAS celiac disease!!! I'm the only one! and I didn't develop it until I was in my mid-30's. The FIL of our company's audit didn't develop his until he was in his 60's, and he's the only one in his family. Both of our cases it was stress that triggered the celiac disease to fully manifest itself. What you can do is get a simple dna test (don't remember who, check older threads) that can tell you if you have the marker for celiac disease. I haven't done it, but am very tempted to. And allergy and autoimmune are different things. But related I think. Anyhow, in allergies the body reacts to benign things as invaders and launches an attack (histamines) to flush the invader out of hthe system. Autoimmune disorders are where the body attacks itself (this is oversimplification, I know). Think arthritis where the body attacks the joints. Only in celiac disease it's attacking the lining of your small intestine.

I can understand your dilemma of wanting to stay on gluten until all the testing is done, but then again, the diet challenge is a valid dx tool.

For what it's worth, I don't believe you are a hypochondriac. Your body is telling you something isn't working right; you have to listen to it to make things better and maintain your health. Don't give up!

No one else in my family has it. And as far as we know I was born with a healthy heart. BUT heres the thing it only shows up in a EKG, or other heart scan (MUGA, Echocardiogram, etc). My first EKG at a docs offics was when it was discovered, so no way to know when it set in. I was 27 or 28 at the time.

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All of my reading re: celiac disease links celiac disease with other digestive issues and hormonal (like thyroid and now pcos). I kinda doubt that there's a link, but then again, the more research done with regards to celiac disease and its effects the more pervasive it seems. But I'm leaning more towards another abnormality causing it. My mother has mytral valve prolapse, no one else in her generation or preceding generations have heart problems, but now it was discovered recently in my brother at age 44. And it's known that this kind of heart problem is inherited.

I am to young for this, not even hit middle age yet, but couple years ago I was diagnosed with heart condition. Its likly it been there most of my life, but unknown till a radom EKG was run on me with realtion to a differnet matter. I have what is known as a Left Bundle Branch Block. This means the nerve on the left side of my heart, the one responisble for beating the heart, is completely dead. The design of the heart has a way to compenstate for this by sending the beat signel down the right side nerve and having it jump to the left side via the muscles. If not for this design I would be dead. How ever, this "backup" method is not as effecitent as the normal way, so my heart pumps slightly out of beat, and somewhat signifigantly less blood then it should. My Cardio-doc says I may need a pacemaker down the road a bit. There is no known cuase for it in me that they could find at the time.

So I was wondering, is there a known celiac disease connection?

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It's not an inherited condition? Were you born with it or did it develop later in life?

Pumpkin Fluff

1 small box of sugar free instant vanilla pudding

1 small can of pumpkin

pumpkin pie spice  or cinnamon to taste

1 container of cool whip (about 2 cups)

Mix the pudding mix with 2 cups cold milk as directed on box.  Mix in the can of pumpkin & spices.  Add cool whip and mix.  Refrigerate.

Mom 2 2

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My SIL made this for me one Tday. Plus she made hers with fat free cool whip so it had only one point on the Weight watchers she was on then. It is good. Thanks for the recipe!!!

I wanted to keep her on gluten so she can be proplerly diagnosed. With family history(her brother) I didn't know they were going to go slow about this. Dr. also wanted to have her take mylanta but I didn't give her any because I thougth that would just cover the symptoms. I am confused now.

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I don't understand why your dd's drs are masking the symptoms. It is not normal for a young child to have constant stomach pains. There is something wrong, obviously. Why are they wasting time? I'm concerned because if it is celiac disease then damage is being done, plus the malabsorption issues which can cause lots of other problems, especially in a young child - Their little bodies need fats for the brain formation, and other nutrients to grow properly. That's why I'm advocating the gluten-free diet. If she shows improvement, then that in itself is a diagnostic tool. That's how my gp figured out my celiac disease w/o expensive tests or wasting time. Just a thought. I do hope she gets better soon.

We been trying to track down where gluten is comming from in my son;s diet. Well he goes to Sunday school at our church and this week I realy got on thier case about it, and the lady said to me "Oh? So grahm crackers are not okay?"     

WHAT PART OF "ONLY ALLOWED TO EAT FOOD FROM HIS BAG" CANT PPL UNDER STAND????

         

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I'm glad you were able to track down the gluten source, but it's a shame you had to do it at all. I know people don't mean to be so ignorant, I once had a server bring me a plate of chicken penne telling me no gluten was added to it!!!! Obviously constant vigilance is our lot in life.

Hi,  When you have Celiac Disease where in the stomach is the pain most likely to be? Upper, Middle, or Lower part of the stomach? My son was diagnosed in the spring and now my 6 year old daughter is having stomach pain in the middle to upper  part of her tummy. They put her on Prevacid a month ago and her tummy still hurts. I just called the office and the nurse told me if it is Celiac the pain is usually in the lower stomach. I thought that was wrong becuase the small intestine is not in the lower stomach. Am I wrong or does the nurse not know what she is talking about.?

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Let's see, you're her mother, the nurse is an RN; I'd put the odds that you know better. Since celiac disease has 200 symptoms, to me the pain can be anywhere the damage is manifesting itself. When I first developed celiac disease the pain from the gas was deep inside and down. Now when I get glutened (not on purpose, mind you!) it seems to be upper and not so far inside. Have you tried the gluten-free diet just to see what happens?

bk and jrom - how long were you sick before dx? bk - as you learn it will get easier. As someone stated earlier, the closer to natural the better the food is for you. And as your body continues to heal, the ups and downs will get less. I finally figured out I had been hurting myself because I was ignoring the word malt. It is definitely a four letter word for me now. I've cut out the cereal that had it and malt beverages, along with rice cakes from Quaker (there's been statements that their products are quite cross-contaminated) and my energy levels have soared. (walked the doggies two miles before work this a.m.)

Keep on trying and be sure to ask questions about anything. No question is too silly, especially when it concernes your health.

Sigh.  Does anyone have any guidance to offer?  I'm freaking out a bit (clearly).

jmarie

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I disagree with your dr re: symptoms. Some people with celiac disease do have bloating, weight gain and constipation. I definitely have the c. Sucks almost as bad as the d. Have you tried scaling your diet way back to fresh meats and just veggies (canned or frozen or fresh) just to see if there is improvement? I agree with Kati in that gluten thingys are everywhere it seems. I've had to pitch a few hair products and watch body lotions. A few of them have aleva sativa (oat).

Is there cross-contamination in the house maybe? Also, after being sick for 12 years, it may take some more time. Keep at it and don't get discouraged.

Isn't it bizarre?  I am still trying to figure out why it manifest in the right shoulder blade area.  My doc is the one who told me it does, and I have now read that it does BUT can't seem to find out WHY.  If anyone knows, please do tell!

Skar

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There's still a lot of things about pain that professionals don't understand. Remember, medicine is an art really, not an exact science like physics. It is very common for one area to be in trouble but have the pain manifest itself in another area. One of my coworkers went to the ER for upper abdominable pain, was told it was gastritis, two days later he was in another hospital for emergency appendectomy because it had burst. (was there for 3 weeks he was SO sick). Medicine is making progress in many areas, maybe someday it will be figured out.

My 4 year old said the cutest thing just now, "you know how the preacher said that if you are doing something right that satan will come against you? well, God must really want me to feel better or people wouldn't be so mean to you about my gluten-free diet"

I think I am going to have to learn from her, that her health is worth fighting for, I really must have been naive thinking that she was going to be the one fighting me on the gluten-free diet and not her doctor.

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Kids are amazing creatures. Please give her a big hug from me for being so smart, and you get one too for being such a good mom!

I also cannot eat butter.  Whenever I eat buttered popcorn I throw up.  Could also be the corn, But in combo it kills me!

Do you have pain in your back (upper right quadrant)?  Mine is very sore there.

Skar

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When I had attacks it was in my upper right quadrant, then progressed to both sides. The other attacks I was so nauseous that I couldn't hold down water. But I haven't had problems for ages with my gb, thank God!!!

I'de go to the bathroom I would have loose and foul smelling stools wich I still have now.

Theres no increase in the amout of times I need to go and I don't have any other pain. Although my tongue is quite swollen and I found a condition called Glossitit that also mentioned that a swollen tongue could be related to Celiac Disease. I have had one pretty bad mouth ulcer (never had one before) in the month or so that I've been experiencing problems with my stools.

Do you think I could have Celiac Disease?

Thanks for any help,

Dave.

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It's a very good possibility. The foul diahhrea is from malabsorption issues. I used to have a severe problem with mouth ulcers during the first two years of my celiac disease - lived in a house full of kids and I KNOW I was cross-contaminated a lot. Plus life was stressful at the time. Have you tried going gluten-free? But if you go gluten-free, then any bloodwork will come back neg if you decide to go to the doc. You have to be on gluten to see what the bod is doing.

I agree with Ursula - don't worry about what others think - You're being a good mom trying to keep one child healthy and have another regain her health. The biopsy isn't the gold standard that most dr's think it is. And why should you dd have to get worse before she can get better, especially when something as simple as the gluten-free diet could help her NOW? Have dr's forgotten the Hyppocratic oath?

"First, do no harm" And not helping in my mind is the sin of omission. Not helping is harming. Rant and vent away. I can't help you much in the ridiculous rules of public school, but I can give you emotional support as a mom. Trust your instincts. In this case, I'm sure mother knows best.

Then I have to catch and turn in three days of samples after eating a high fat diet.  Sounds rather gross and disgusting to me.  He didn't even tell me what he is testing for.  Any ideas?

Everyone else here seems like they took the long way around to get to Celiac.  My doctor thought that is what it was when I first saw her, but now they are looking for other things.

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I don't know about the bloodwork, but the catches you are turning in are to measure malabsorption issues. A very high fat in the samples points to malabsorption and rules in celiac disease. Have you just simply tried the gluten-free diet? That's what my gp did to me 9 years ago. I haven't bothered with anything else, but am thinking about the gene testing when I have money. I don't think my insurance would cover it. But then again, I suppose I could talk to the benefits coordinator at my work which happens to be - ME!

Is there an average amount of time one must be gluten-free before symptoms start to abate? Not only was I not warned about oatmeal and hidden sources of gluten, I suspect a week is not long enough to be on a gluten-free trial diet.

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No average, it's very individualistic. Three weeks seems to be the minimum, but only if 100% gluten-free. Three to six months is more normal. Remember, your innards are damaged and the healing time depends on how much damage and how long you have been sick before the gluten-free diet. And on your own physiology - if you are normally a fast or slow or medium healer. Just don't lose the faith.

I wouldn't think their pepper has gluten directly added, more of a contamination concern.  This pepper is over a year old too, so any new labeling done wouldn't apply to this item.

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I just checked my Great Value black pepper (it's old too). The labeling laws were in effect when this can was purchased, and as it doesn't have anything else added except black pepper, nothing is printed on the can for ingredients. But black pepper isn't an expensive item - replace it if you have doubts. I know I'll be going back to WalMart tonight or tomorrow - I'll check the new cans then.

Discovery health channel--is that different from the regular Discovery Channel?

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Yep, unfortunately. Sometimes they will put things on the regular Discovery or TLC from the health channel to promote the health channel, but not on a regular basis. It costs way too much for me to extend my cable to include the health channel, darn it. But a friend at work saw that program already and told me about it (and this was after I had a fiasco at a seminar where the meal was provided, banquet style). He said that the mother had celiac disease, didn't realize that her boy had it too, as he was asymptomatic. But he did have learning/memory problems. It was because of that that he was dx with celiac disease. My friend said that she was feeding him healthy foods, but starving him at the same time because of the malabsorption issues. At least ONE person in my office has a better understanding of what I can experience if glutened.

Hi everyone,

I went to a new doctor today b/c of more nausea and pain in my back.  I assumed that the pain in my right shoulder was completely unrelated to my abdominal problems, but the abdomen strikes again.  Apparently, gallbladder disease often manifests as pain in right shoulder, along with the abdominal symptoms.  Anyone else have this?

Skar

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I've had what I think were gallbladder attacks - I have read where those with total hysterectomies are more prone to have their gb removed later, so I associated the attacks with my hysterectomy. Come to find out others with celiac disease also have problems with their gb. My dh, when we were first dating, made the most wonderful meal for me (he's an ex-sous chef) with the richest butter sauce I'd ever had. To die for even. And later I thought I wanted to - the butter sure didn't agree with my gb!!! I've had a few attacks since then when I knew I wasn't eating anything with high fat in it, never attributed it to celiac disease until I joined this forum. I would strongly recommend low fat to see if the nausea and pain subside.

My food guide says that icing sugar is not gluten-free yet and there is no list of ingredients on the package I bought (Rogers). I assume it is just sugar? Hmmmm........what do you think?

Ana

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I'm not familiar with that brand. My icing sugar (or powdered sugar or 10x sugar) has beet sugar and cornstarch. Maybe that's what's triggering the non gluten-free label - the starch. I guess you would have to contact the company or buy icing sugar that does have the ingredients listed. When in doubt - don't

Thanks I am eliminating it because I don't have insurance to be tested. It's sounds like I do based on all the problems I have encountered since childhood. I have to get rid of these migraines to function again. The stomach problems aren't so great either nor the scalp flare ups.. Ugh, were you depressed when you found out you had to change everything?

Thanks a bunch,

Katie

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Well, the gluten-free diet would be cheaper than dr's testing, and it is a valid diagnostic tool - the gluten or diet challenge. That's how I was dx'd 9 years ago. But you do have to be 100% gluten-free - no wheat, oats (they're cross-contaminated in the US. The official verdict on oat itself is still out), rye or barley. No malt from barley, or spelt, or triticale. Some things are labled wheat free but still off limits to celiacs. And as for being depressed about the diet - I just wanted to feel better so I didn't care what I had to cut out. I still had issues with it at the beginning, but since I've been really 100% gluten-free, I don't miss the stuff - I enjoy my health too much. And depression has been linked to celiac disease, so going without gluten-free relieves the depression.

Good luck and keep us posted, ask any questions you want.

I agree with darlindeb and cornbread. Ask your cousin how much rat poison would be safe for him to eat. Even if there are no outward/noticeable results from ingesting gluten harm is being done. I know, I've done it. For the longest time I didn't understand malt, but after joining this forum I realized that I had been glutening myself for years - albeit in small amounts . So three weeks ago I stopped eating the cold cereal that I thought was safe for me (malt was in the ingredients), stopped the rice cakes (supposedely severely cross contaminated. Don't know for sure, but why take chances), anything oat, and the malt beverages. AND I FEEL GREAT!!! I thought I was doomed to a life of low energy levels and fuzzy brain because of celiac disease. Nope, it was me doing it to me!!! Since I've cleaned up my diet, I've finished off a wood refinishing project that had been in the garage for 5 years, rearranged the garage, finished off a quilt top, run circles around my husband and have lost 3.5 pounds (49.5 more to go). So when the subject comes up again, ask for the empirical sources he's quoting, or for which article in the JAMA he read it in!

Keep on keeping yourself gluten-free!

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It just seems strange that out of six GIs I've seen, no one has tested me or given me enough information to truly understand that this might be my problem.

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Unfortunately after reading a lot of posts, it's not strange, but almost the norm, for celiac not to be mentioned regarding gi problems.