nettiebeads

Why don't you ask your gastro to introduce himself to a poison that would make him sicker than a dog for 3 months and see how he likes it????

I agree with the Claire and Nini. My good ole gp just did the diet thing and I'm satisfied. You know your body better than anyone else can.

Hi All, I have a question. I was diagnosed after 40 years of severe illness.  I have a bit of a problem with calling myself diseased at this point. I am healthier than I have been since I was 5 and my symptoms began. I feel strongly that I simply have a genetic difference, I am NOT diseased now but I sure was before I went gluten-free. Does anyone other than me feel this way?

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I prefer the term disorder

In all seriousness, it is not a disease in the sense of a virus attacking you. In this case disease is an archaic term - there are better terms for celiac disease but the label has been assigned and so I'm sure it will stay.

I know that muscle weakness and fatigue are symptoms.  My question is, does anyone experience muscle weakness all over some times?  And such great exhausion after say a day shopping or running errands like you have to take a break and rest before contining your day?  Sometimes it's like my arms and legs are just about to give.  Usually after I rest for a while, or when I get up in the morning, I feel better.

Does it ever seem like you start out well, but by 5:00, it's all you can do to get dinner on the table?  Sometimes after work, I'll take a short nap, then I'll be find for a while.

I am stilllllllll pre-dx, waiting for my blood tests that were done the first of this week.  Just looking for some input.

Thanks.

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oh yeah, the great fatigue. I remember it well and DON'T want it back. I thought of it as swimming upstream in a molasses river in January. And since you've already had the blood tests, why don't you go gluten-free just to see how you feel? Once the gluten is out of your system, you will start to heal and the body will feel much better w/ more energy. Promise.

Abdominal pain and cramping

alternating diahrrea and constiation

cold sweats

bloating

gurgling stomach

major reflux and stomach pain

gas pains

inability to digest fruits and veggies

dizziness and lightheadedness

All the best,

LAURA :-)

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You may have celiac disease, or at the least a gluten insensitivity. What I do remember pre-dx was not only the D but the painful, painful gas. And constipation is a symptom of celiac disease, but I didn't think it was for IBS. And I agree with you - it's easier for drs to say syndrom than find out if it's an actual disease.

According to other members, money on Enterolab is money well spent. Besides that, the test is non-invasive. I sure would prefer that to a biopsy of the small intestine. Has any dr. ordered a celiac panel? Have you tried the gluten-free diet just to see what you felt like on that? Hope you have answers soon so you can start healing.

hey hey this is my first time going gluten-free trick or treating and i dont know wich treats are gluten free  and i dont want to be  onn the phone all week callig places please share noledge sory i didnt spell that wright and help make gluten-free teat eating a little bit eisier 

thanks

ps. my fist gluten-free bday is comming the same month any ideas

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Okay, so I'm not a teen - but twizzlers and licorice is out. And if you like ice cream cake, call DQ a couple of days ahead and I think they can make one up for you that would be gluten-free. (My great nephew was born on 10/31)

Of course we'll be gentle!!! We all know the pain(s) you are going through. I think celiac disease is a definate possibility. Ask for the blood test for the celiac disease panel - that might help rule celiac disease in, but won't rule it out, but at least it's non-invasive. After all you've been through a blood draw would be so very simple. And as for being put on an antibiotic just in case is ridiculous!! Guess what one of the side affects are of antibiotics - diarrhea! Sheesh! And I'm sorry to hear you experiencing the unfortunate apathy that seems to abound in the medical community. To me, that's next to criminal! Have you tried the gluten-free diet? After your next round of appts, why don't you try the gluten-free diet, at least for a couple of weeks to see if you feel better. It is a valid dx tool, called the diet challenge. That's how my gp dx'd me 9 years ago. Hope you find your answer soon so you can start getting better!

Has anyone had any ear problems or dizziness? Or ear problems that caused dizziness???? Mid-June last year, I had a horrible "dizzy attack." It went on for about 5 days or so and was constant. It calmed down the next few days, but kicked up again after I went on a plane.

The dizziness is STILL there, after more than a year, and gets worse when I swim, go in high altitudes, or fly in an airplane. I almost think I always have it, but my body is just so used to it, it has adapted.

I went to many doctors, and one doctor thought that I had less water in one ear, or something like that. The only problem is, is that he didn't do anything about it. When my regular doctor found out that I had Celiac, he said that dizziness may be a symptom. But, it isn't that much better.

Ooh, and another symptom is that I also have head rushes. Like when I stand up, even if its really slow, I black out for a second or two.

Anyone else had problems??

Thanks,

Lisa

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well, yes and no. I think you may have more than one problem. My head was congested all summer-could even feel the water sloshing around in my eustatian tubes and I don't swim! Took otc decongestants and that helped some. But it wasn't until I realized that I had been giving myself a very low level of gluten every day that my ears cleared up. I had been eating a cereal sweetened with malt (I feel so stupid for that) but cut it out two weeks ago and the congestion in my ears cleared up. And the head rushes are a medical condition related to blood pressure. I don't remember the name of it, but it can be treated. Please see your gp and mention the head rushes to him/her. It isn't uncommon.

First of all, welcome to the forum. Second, I'm sorry to hear you're feeling so miserable. At least everyone here knows what it's like to have your body feel like it was betraying you, at best, and attacking you at the worst. Have you read the short list of the 200 or more symptoms of celiac disease? Believe it or not, constipation is one of them. That, plus the gas you described makes me think that it is a possibility. Ask your gastro to do a blood panel for celiac disease. It's non-invasive, inexpensive and could help rule celiac disease in or out. Even without the bloodwork results, I would recommend doing the gluten-free diet as soon as you get home from the dr. One, it couldn't hurt, and two, after a couple of weeks on the diet, you may actually start to feel better.

The gluten-free is another way of dx celiac disease. (my good ole gp did it that way for me 9 yrs ago).

I sometimes get the impression of drs that if what's bothering you can't be treated by drugs, then there is no medical condition for them to treat.

Some more questions for you:

Age?, nationality? (norther europeans seem to be much more suseptable to celiac disease. I'm half swedish), anything else going on in your life when you woke up and your body had been replaced by an alien one? Stress, viral infections and pregnancy can tip the scales so that if you have the markers for celiac disease, it can develop.

I sure hope you are better soon, keep us posted!

I'm really new to being gluten-free, and I was wondering about Campbell's soup.  Cream of Mushroom and Cream of Chicken soup both contain "modified food starch".  I know that can be questionable sometimes, but does anyone know if Campbell's specifically uses wheat starch?  Does anyone have a list? I love cooking with these soups, so if you know of any other namebrands that have gluten-free cream of mushroom or chicken, that would also be helpful. THanks so much!

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My experience in reading regular Campbell soup label is that they will state wheat/wheat flour. Most of their products do contain wheat. Be very careful in reading their labels.

After being sick for two years, it will take time to heal. Just as the damage was done over time, the healing will be done over time. Nope, no miraculous healings from going gluten-free. Sorry. But be sure you are completely gluten-free - no wheat, barley oats or rye, no cross-contamination, and no triggers in bath/beauty products. And FWIW, to me your symptoms sound like the classic celiac disease symptoms. I never had any formal tests, just the diet challenge which caused huge improvements in my health. Hope you keep on getting better!

Just wanted to say I am grateful that this board exists.

I don't know what I would have done without it.

I think about this everyday when I use it.

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It seems everything happens for a reason. I finally searched out and found this board after going it alone for 9 years. There was one incident that was the proverbial straw a few months ago and I HAD to find somebody to help me through.

I have learned so very much in two months than I had in 9 years! I go to bed every night thinking of all the people I've met here and wondering how they are doing, getting better, feeling better...

HUGS to all

some of Pamela's gluten free cookies,

BamBam

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Pamela's uses something that I'm allergic to. I think it's the xanthan gum. Darn, because they are tasty, but after one cookie my mouth and lips are all itchy.

celiac disease and the gluten-free diet are still very new to me and I suppose, with time, last year will come to feel like the aberation that it was--the consequence of a disease, not a reflection on me or my character.

I wonder: have any of you had to make peace with the emotional complications of celiac disease?

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You haven't been far enough along on the gluten-free diet to get the full emotional benefits of being gluten-free. Please lighten up on yourself - you did the best you could considering the circumstances. The fact that you are concerned about how you affected others says a lot about your character. The longer you go gluten-free, the more emotionally stable you will become. Me - I don't really remember life without depression (my first episode was when I was 9), but when I've been glutened, I bottom out. What helps is that knowing it will run its course and then I will come out on the other side and go on.

As far as making peace with the emotional complications - I know I didn't ask for this disease and sure wouldn't wish it on anyone else. When I get glutened now, I know what I'm in for and sort of isolate myself from my husband - we've been together for three years and is very understanding. I so try not to snap because the celiac disease makes me quite irritable and just lay low until it passes. As you can see from the other posts, you have hit on quite an exposed nerve for everybody. So don't feel so alone, don't be hard on yourself. You didn't ask for this disease either, but now that you are aware of the emotional complications, you can do what you need to do for yourself and others around you to lessen the effects - read, watch movies, hobbies, whatever. Hope you are feeling better physically and emotionally very soon.

I don't usually post here, but would like to share some information about the wide ranging neurological problems associated with gluten sensitvity...with or without celiac disease. Check out Post #3.  If anybody seems to fall into this category..please consider stopping by the Braintalk Gluten Sensitivity forum where we have an increased interest in the neurological aspects of gluten sensitivity.

Open Original Shared Link

Cara

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Wow! that is impressive! Even more reasons to stay 100% gluten-free!. Also a great resource for those whose drs. AREN'T in the know. Thanks!

my daughter is newly diag. with celiac, we r just waiting for lab result but did have pos biopsy.  she has only been gluten-free for 1 or 2 weeks ( i think we are still learning which foods she can eat) but her pain is the same if not worse, how long does she have to be gluten-free before we see results?

vic

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Many variables come into play here. How long was she sick before dx? Do you know how much damage had been incurred? Is she totally gluten-free? Are there hidden contaminates in her food, meds, skin care, hair care? Is there a possibility of cross contamination? I hadn't been sick for very long before I was dx'd, but it took me two to three weeks for the d to stop, but still took awhile before I felt more normal. But then I had a house full of kids so I'm sure I was cross-contaminated a lot. Hope she improves soon.

Whats a fritter? 

You could easly make ti thinner just by adding more water.. but it is already prety thin. I was thinking to increase the dry ingredents a bit to thincken it.

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It's a southern thing. A hush puppy is a fritter. Most fritters have fruit in them, but not necessarily.

Does anyone know if Panera's coffee drinks are gluten-free???

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I've had them without side effects that I can remember.

Thank you all. I thought that I was unreasonable or something(it has happened before ) I will continue and try not to let my anger for this person let me take it out on other people. I have made a decision that if people have a problem with Annika's diet then they don't deserve our company. Last year my family refused to get a gluten free turkey at Thanksgiving (and Annika isn't the only one with celiac in the family either) so we had thanksgiving with my husband's family. It was so nice for Annika because she could eat everything except the stuffing and some of the desserts but they bought special dessert for her and this year they are making gluten free stuffing I married well, huh ?

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A pretty good rule of thumb for life is not to hang around people who upset you if you can help it. Looks like you are practicing that. Why some people can't be accomodating I don't know. It's not like you jumped up and down with joy when you got her dx of celiac disease going "now I can draw all kinds of attention to my dd because of the celiac disease! Woo-Hoo!" (yes, I'm the sarcastic one) It's a disease I wouldn't wish on anyone. So if people are going to be accomodating to your dd, then of course you will be gracing them with your presence. Give them a big hug for me, and for your dd, because she's had to learn about short-sighted, insensitive people so early on. And as for turkey day - I'm kinda dreading mine - it'll be with dh family. He's cooking so I'll get a really yummy gluten-free cornbread stuffing and the rest will have to make do with stove top stuffing. But believe me his oldest sis will say something! And she's had that gastric bypass so SHE has special diet needs. Ah, the life of a prima donna must be so hard... (sarcasm again, sorry)

Hi there - I was just at the doctor's office for my followup since being diagnosed with the TTG test and endoscopy.  My doctor mentioned that I "wasn't even that positive" on my bloodtest. She mentioned that the TTG test range was anywhere from 1 to 7 being negative or normal. I had a level of 10.5. (She was telling me that she just diagnosed an asymptomatic Celiac the other day with a ttg level of 130...)

Could someone tell me what this means?  My endoscopy showed moderate villi blunting...so I assume I'm just at the beginning of this whole Celiac thing...I'm still confused

...anyways...if someone could help me interpret that number that'd be great ...thanks again...AmandaD

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Not that positive.... is that like "not that pregnant"?

Thank you!  I'm a freshman in high school.  Actually, I want to be a doctor

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With your quick mind and amazing grasp of a wide range of subjects, I bet you could be whatever you set your mind on. And if you were to be dr., would you specialize? And let me guess, autoimmune disorders?

I`ve got gluten intolerance without celiac. Im getting small patches of red dots caused by bleeding into the skin sometimes coming back in the same place and other places. Does anyone else have this with or without celiac?

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Sounds like they could be hemangiomas. Hereditary and harmless if they are. I don't know about being celiac disease related. I've had them all my life, but a while back I really broke out with them.

Does anyone know of any soups that are gluten free?

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As in store bought? I use a few of the Campbell's chunky Grilled Sirloin Steak, Campbells' select gold label Italian tomato with basil & garlic and the butternut squash one, Healthy choice Chicken w/ rice, oh, and the chunky chilis are okay, and Dinty Moore beef stew. Does that help?

I can't handle red wine - severe allergic reaction, even if cooked in food. Sucks as my hubby makes WONDERFUL sauces (ex sous chef)

Umm, their response follows the new labeling law -- the top eight allergens must be plainly listed -- and they'll also plainly list any other source of gluten. This is absolutely the best we can ask of any company. No need to call them ever or worry about whether a list is out-of-date. Just read the ingredients. If every company did this, our lives would be much simpler.

richard

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I'm very thankful for the new law - I was checking out a bag of candy on a coworker's desk and while it did not contain any gluten, it was made in a facility that also processes wheat. So not only was I saved from the calories , I was spared a possible cross-contamination.

I emailed the co. and got a reply

"...Smirnoff FMB products (Smirnoff Ice, Smirnoff Ice Triple black, Smirnoff Twisted V line) do not contain gluten, however they do contain a similar protein from barley called hordein. If you are able to tolerate beer, then you should have no problem with Smirnoff FMB products. If you need additional information on this subject you can log on to this site: www.celiac.com, which will provide additional, detailed information about gluten intolerance...."

No beer, now no smirnoff products. BOO HOO!!