Lisa

MG:

I worry about you, my dear. These symptoms seriously worry me. I don't have a lot of good advice, but I'm sure someone on here will.

And you are NEVER EVER EVER a damper. EVER. This thread has health related and silly moments, but what draws everyone together here is their search for improved health, whatever the reason.

Many, many, many hugs to you. I pray your app't goes well.

Love,

Laura

xxoo to you Laura. Thanks for you thoughts.

Happy to talk to the whole of the OMG thread - and hello to everyone.

With that done...all the people who would have answers are here. So hence, my questions:

I have had increased numbness beyond my knees, tingles and somewhat like they were falling asleep. Sort of like, when you come out of the cold, but no heat. And an occasional sharp pain in the groin hip area and some in the knee. Night-time diarrhea for three nights. Some daily sweats and night it is bad have not had a menstrual issues in over 10 years.

I have looked up peripheral neuropathy, diabetes (don't like that one), B-12 or folic deficiency, hypoglycemic......... or just simply another food intollergence as soy. I have been dairy light as much as possible. (I ate a whole can of Lay's original in two days and it co-insided with two nights of the big D).

I have an appointment next week with the same guy who said my back ache is not related to my GI issues. Well, he did sent me to the GI who Dx's me. Going back to him for the first time in 2 years.

I am armed with paper work and research. I want to start off with a new metobolic panel, and begin there.

After that where should we go? The numbness in my legs are my greatest concerns.

I don't want to put a damper on Rachelville. But this is where to good stuff comes from. I do wish that it could leak into the general board.

BUT, your thoughts would be helpful. I am seaching.

I saw my PC today, she said "they are totally normal. They are from aging or pregnancy."

She INSISTED that they had been there all along, because no one gets these "over night."

I told her that in fact yesterday there were none on my forearms and pointed out 8 of them to her, that are on them today.

She told me not to worry about them. But then the kicker... she said that her other patients who have been diagnosed with celiac have felt better by now (referring to me being gluten-free for a month, post diagnosis.)

I think I was in shock.

The woman has no idea what the symptoms for celiac are, misdiagnosed me for 3 months with acid reflux when I was in the bathroom 3-5x daily with D, AND has no suggestions or advice other than...

"well, don't use lip balm or eat foods with gluten in them"

Her closer: "well I guess its up to the GIs now"

[insert expletives here]

WHY did I waste my time and money?

I am posting premature....did not read the whole thread. But, your Dr. doesn't seem to get the celiac thing.

Do what you feel you need to do. A gluten free diet needs no DX from a DR. If it helps you, make a choice. No future testing nor expense is necessary.

(Now, I'll go back and see if my post is relevant.)

I mistakenly licked a Mead envelope. Does anyone know if this brand of envelope glue has gluten in it? I'm so dumb!

Don't know but I hope you have a good experience.

Hello everyone - This is my first post but I have been reading and being informed/supported by this site for 6 months now. I have had very similar experiences with Doctor visits but I had a really positive experience with a local dietician here in Portland Oregon. Her name is Niki Strealy, RD LD and she works for Providence Portland Medical center. She has been studying GI disorders related to diet for 11 years. She had SO much information and she had many cool websites to check out. For example the website www.triumphdining.com has dining cards that state in different languages that I need to be gluten free and then it lists all the common foods thatmight be in their food (mexican, japanese ETC. ....)

Also a short vent.. Has anyone else had this experience? 6 months ago my PA guesses that I was intolerant to gluten so I get off gluten and feel great after only 2 days. The blood test comes back negative for Celiacs disease but if I eat gluten at all I get violently ill and my severe itchy rash comes back. So I got to a new primary MD and ask if he knows anything about Celiacs disease. He says oh yeah and that if the blood test is negative that its not gluten that is bothering me. So he wants me to start taking meds for IBS. I say no thanks I'll stick with my route. my dad died young of carcinoid symdrome intestinal cancer- his sister now has intestinal cancer and his dad also now has intestinal cancer all carcinoid syndrome. I am very worried not only for me but for my 2 year old that may have this problem too.

THanks mhansen

mhansen welcome and glad you posted.

So many members here are self diagnosed due to frustrations with the medical community. With your family history I would strongly suggest that you continue with your diet. Your body is telling you something and I feel it's important to listen to that. With a possitive dietary response and strong family history, perhaps you have come to a diagnosis on your own.

I don't have young children and I will defer to those that do. I have heard that a 2 year old is young to test as they are not very reliable.

Good luck to you and glad that you have joined us.

Earlier this afternoon. I get updates from the NFCA.

OK, I think they did one last year also. All the better.

I already did this via email

Me to, I think? How long ago was this Patti?

I figure I'll have them both tested for the antibodies. If they are + then they'll be gluten-free. It'll mean some changes for my vegetarian 'cause right now I do quite a bit of whole wheat for her. Even if the only one is + this house in going gluten-free! Not sure what's involved for the gene testing. I'm adopted so I have little backround. Some of the health history I have from my birth-mothers side includes early osteopirosis in the women. Wonder if they were undiagnosed celiacs.

I balked at having the biopsy done on myself, let alone my kids. Antibody tests possitive and I got better gluten-free, but the GI doc talked me into it no only to confirm celiac disease but to check the amount of damage. Is this really so?? I know it's supposed to be quick and easy but I'm a bit squeamish!!!

With positive blood work, that in itself is a diagnoses. Yes, the biopsy MAY confirm you diagnosis, but it can be hit and miss - there is over 20 some feet of intestines in there. The endoscopy is also used to detect the amount of damage.

I have had and endo and biopsy and the worst thing about was the jitters before they knock me out. It was over in no time and I have no recall. No ill effects, other than a slight soar throut.

Done

Thank you thank you for input.

They are testing with an US because I have a history of ovarian cysts, and they want to check out the pain in my side. This is different than cyst pain, and I have had times in the past where i had pain, thought it was a cyst and the US turned up negative. I have now learned to differentiate the pain. But they want to do it anyway (I get the day off work, so I'm not going to complain!)

I think he wanted me to try avoiding gluten at first to see if it made a difference. Which I feel it has. So I will work gluten back into my diet until I have some sort of diffinitive answer, so as to ensure accurate results. Even if I come up with all negative results for Celiac's, I will most likely cut it out anyway, since it is so far helping quite a bit!

When I had teh blood tests I was still eating gluten, which probably helps explain the "gluten sensitivity." When I re-visit for US results I will ask for a copy. My regular DR is coming back in a couple of weeks, and he is great at explaining things in full detail, and not treating his patients like idiots.

Thank you again. I appreciate your support!!!!!!!

Good, well, keep us posted about your results. In the mean time absorb as much as you can. (information, I mean )

I am sorry that you are not feeling well.

But what concerns me the most is that you DR informed you to go gluten free during the screening process. You must remain on gluten to achieve the most accurate testing possible. Even given that the blood testing is not always the most reliable.

If you DR is looking for Celiac, an ultrasound will not indicate anything. An endoscopy exam should be the next course of action for a diagnoses.

Pepcid OTC or Pepto may help with the bloating.

Hope you feel better soon.

Thanks for the post.

In addition, it is often recommended to limit dairy for a few months until healing can begin. Even after two years being gluten free, I am able to tolerate limited dairy.

Hello all. I am glad to have found this site. I have had GI problems for years. After doing my own food trials I discovered I was fine if I avoided wheat (not gluten, just wheat) An upper abdo pain finally got me to a GI guy and he did the blood tests that came back positive for the antigens and that I probably have Celiac. I go for a biopsy next week. I'm taking as much in as I can and I'm sure I'll have many questions as this thing plays out, but today my questions are about my kids. Did moms/dads out there have their kids screened? I look at the list of symptoms and can definately fit my kids into a few of them. My oldest (11) has been a veggie for 3 years. No GI problems at all and no growth problems (she's already 5'5"). Her 12 year molars are coming in with holes in the enamel and i have read this to be one of the signs of Celiac. All her other teeth are beautiful. My youngest(8) is a diffferent story. Average height, always has been super thin. Between 7 and 8 she gained 3 pounds. Often complains of stomach aches and sometimes has HUGE soft bm's. This child is easily irritated and has some difficulties with school work. Lately she's had an intermittent rash of pimple type things come and go from her upper back. Don't know if this is somehow related.

Should i wait to see what my biopsy comes back as? I did 2 weeks totally gluten free and I felt like a different person. I had energy that I haven't had as long as I can remember. So no matter what the bopsy shows I will follow a gluten free diet. Doc says not to stay 100% gluten-free until after biopsy so I'm back to my gassy, bloated tired self!

Will the blood tests be enough for the kids or do they need biopsys too?

One more quick question- I love to cook and have amassed quite a collection of utensils and cookware. Assuming my house and everything I cook will be gluten free, will running everything through the dishwasher be sufficient?

Welcome Luisa, this is a great place to learn. There isn't much about Celiac that can't be answered here.

I will leave your questions regarding your children to those that have young ones.

Regarding your kitchen, I would loose all the wooded spoons, scratched non-stick pans and pots. Purchase a new toaster and a bread machine is you have those.

I have cleaned out my drawers to remove any traces of crumbs from my previous life. If you have used containers to store gluten flours, either replace of scrub well.

Most dishes and glasses do well in a dishwasher. The heat does not remove the gluten, rather the soap and the action removed the particles.

I would give your pots and pans that are still fit for use a very good scrubbing to remove any residue remaining.

I know that this is a lot to take in, but you seem well on your way. Good luck to you and feel free to join us at any time.

In the US maltodextrin is general derived from corn. If otherwise, by law it would be required to list wheat if it is in the derivitive as Maldodextrin (wheat).

I am sorry that you are going through such a difficult time.

Regarding load noises, yes, I am very sensitive. But, not before Celiac. Load music, sudden load noises, elevated volume on the TV....all rattle me and I get very anxious.

I use Nature's Bounty B-12 and Folic. I have called them to verify gluten free. They are a very pleasant company to deal with. I was quire impressed.

I did have the celiac panel and know I am celiac. I had an ovarian cyst rupture in March and have had pains every time I eat food since then. The ovarian cysts are coming and going and are benign so we are going to do another ultrasound in about 6 months. But I think it set off the celiac disease in full force even though I do see now that I had some stomach aches and constipation for a year or so now. I'm really lucky they found it so quickly since my sister was already diagnosed. She has had it for about 10 years now and became really ill before they figured out what was wrong with her.

Thankfully when all this was going on my Dr. asked about family history and very willingly tested me for celiac since my sister has it and my grandmother died of intestinal or bowel cancer. The GI Dr. wanted to do a colonoscopy and endoscopy at the same time because of past family history. I'm only going through the tests to get completely checked out. I really don't want to, but think I will feel better if I have everything checked over in case there are other problems.

Next I think I'll have to get my children checked. I hate that thought because they are only 7 and 9. I'm sure it's better to know early in life to avoid all kinds of problems for them. I just hope they would only have to go through the blood test and not the endoscope. I've read some of the threads about the Doctor not diagnosing them if they don't get the scope. I dread all this for them.

I'm very anxious to go on the diet now to see if I really can NOT have a belly ache. I think it's become so normal that I didn't realize how long it might have been going on!

Thanks Momma Goose, I do understand that the blood test is accurate when positive. I think in the future they will not require the endoscopy for a positive Dx on celiac. Won't that be wonderful!

I am sorry if my post was a bit blunt. I had a really bad week full of emotions. I am usually quite a bit more welcoming than realized in my post.

But, I would continue to suggest that you read as much here as you can, so when you are ready for the diet you will be armed and ready. This is the best source of information that I that I know of.

I visited my celiac sister yesterday and she had Redbridge beer. I can't tell you the last time I drank beer because I would always get a burning in my belly, stuffed up nose, and feel really bad the next day, and that is with only 1 or 2 beers. I tried one and could not believe I could still breathe clearly. I had to have another because I could not believe I felt ok when drinking it. Has anyone else had a similar reaction to regular beer. I never had a headache or felt bad in any way. Is that because I am celiac?

I also realized that whenever I wear mascara and forget to take it off before bed that I would get a stuffed up nose and itchy eyes. Does mascara have gluten in it and can it cause this type of reaction?

Just a FYI. My bloodtests were positive and I haven't had the endoscope done yet so I am still eating gluten containing food.

Anyone ever had similar experiences?

Bellyfat,

If you had a positive blood test for celiac ( by a true Celiac Panel), you then have Celiac. No doubt about it, other than yours. You are diagnosed. If you want to continue eating gluten to check on the amount of damage, then yes, continue eating gluten. If you are comfortable with your diagnosis, then you can begin the diet immediately and begin your road to recovery.

May I recommed that you read some of these posts on this site. They can be very informative.

Hi Everyone, Still trying to clean out my freezer of possible foods that contain gluten. Everyone advises me to read the label but because I am still new at this I am very confused.

Advise needed for Hillshire Farm Beef Smoked Sausage. Does anyone know if this product contains gluten.

Thanks so much

I doubt it, but you should always real labels. The labeling law would require to list wheat if it is an ingredient. I buy Hillshire Farm's Kielbasa a lot.

Betty, I don't know how to advise. There had been much discussion on this board regarding blue cheese. If I recall properly ( questionable), most common blue cheese now have a starter that is not bread induced. I can offer no documentation to that. Perhaps a search on this sight might bring forth some information.

I have had blue cheese many time and do not feel the gluten effect. But, if at that time, I consumed too much dairy, I do have a dairy issue, but not the fog from gluten, but do not relate this to gluten.

Never the less, I am sorry that you are feeling bad and hope you make a speedy recovery.

Laura, sorry about your dinner tonight (drinking mess) and I hate to say I am way behind news. Don't even know what it's about? Sorry me!

Has Judy checked in?

Hi I am trying to find out if karo light corn syrup is gluten free. I have the ingrediants its

light corn syrup, high fructose corn syrup , salt, and vanilla I am just concernd about the vanilla does any body know?

Thanks! Hanna

Hanna,

I think that theory regarding vanilla (alcohol) is a concern of the past. Distilled alcohol appears to no longer being an issue - to most, or regarding gluten.

But, to be on the safe side, I would await other comments.

:lol: :lol: :lol: :lol: :lol:

GO Bevvy-wev!!!!!!

She said Goosey.

Susan, Bev has called me "Goosey" for a long time and with a little bit of endearment. I can answer to that with no problem.

You can call me many things, but "goosey" is a fond term.

Hi Everyone, I am brand new to this forum. Have just recently been diagnosed with gluten intolerance and am trying to not break down into tears. I realize that I can still eat many products but am just feeling sorry for myself.

Question: I have been craving a piece of kielbasa and am afraid to try. Can any of you tell me the product names of kielbasa that contains no gluten. On Amandas mommy blog I believe she lists Hillshire Kielbasa as a gluten choice but I need to confirm this.

Yes, it is gluten free.