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CATCHPSU's Photo CATCHPSU Posts: 318
9/8/12 9:17 A

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Jenn - I don't have an official diagnosis either, but staying GF really helps me.

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A_WISE_WOMAN Posts: 736
8/13/12 4:46 P

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Welcome, Jenn!

I read a book awhile back (I forgot the name of it) about food sensitivities that said flat out that, once cutting out the offending food(s), if you reintroduce it within some period of time (which could be quite long--if I remember correctly, on the order of a year or more) that the reaction would be worse.

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ALEXIS_LYNN SparkPoints: (251)
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7/30/12 1:48 A

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Even though you have already made your decision to stay gluten free (a good one, mind you), I just wanted to let you know something else that might explain it. My best friend has been fighting Lyme's for a long time now and she found out that having Lyme's can cause any gluten sensitivity that you might have had in the past to get worse and become gluten intolerance (they think one out of ever two people has some form of gluten sensitivity, which doesn't necessarily mean celiacs or even gluten intolerance). That is why they suggest that most Lyme patients go Gluten free even if it is not a necessity for their treatment. I think your Lyme's might have triggered it and made it worse. I'm sorry to say that even when the Lyme's is finally gone, the gluten intolerance stays (which I'm sure you've already figured out). Needless to say, I don't think that your problem is necessarily Celiacs, its probably just gluten intolerance. Hope this helped!

HEALTHYBARB1's Photo HEALTHYBARB1 SparkPoints: (113,682)
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5/2/11 8:33 A

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Good for you Jenn. Knowing what is best for your own body and doing it is awesome! Barb

Smiles from Barb!!

"If you want something you've never had...you must do something you've never done!"

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JENN03275's Photo JENN03275 SparkPoints: (33,101)
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5/2/11 6:37 A

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Thank you for all the responses I have received. Since staying GF makes me feel great 99% of the time I do plan on sticking with it. I won't see my PCP until fall but see my rheumatologist next week. All I can do is tell them how I felt before and how I feel now. I am not willing to go back on glutenous foods for a blood test. Don't want to go back to feeling bad. I am ultimately in control of what I eat. I don't need a Dr to diagnose it to be "official". Funny thing is, my children's pediatrician agreed with me.

Thank you all, stay healthy and happy!!

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JENCORINNE's Photo JENCORINNE Posts: 1,932
5/1/11 10:02 P

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Hi Jenn, I'm Jen, nice to meet you.
I agree with what others have already said. I will add that when the Dr said you didn't have a rash so couldn't be CD, just irked me. I get the rash it's called Dermatitis Herpeformitis, and be very thankful you don't get it, but only about 1% of CD get it so he shouldn't be looking for it as a main symptom. I'm glad he thought of it since getting my rash biopsied is what finally Dx'd me.

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HEALTHYBARB1's Photo HEALTHYBARB1 SparkPoints: (113,682)
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4/26/11 8:12 P

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Hi Jenn- there are 5 members of my family and 3 close friends plus myself that I have heard their personal celiac stories. 2 have no symptoms but positive test results both blood work and GI testing showing celiac. Others are a mixture of differing symptoms and test results. I have noticed that our immune systems all react differently and display differing levels of reaction both physically and with different test results and 6 of us are all genetically related. If you have symptoms that get better when you are gluten free than I would go with what is best for you and not eat something because of what a doctor says. Our bodies are all unique and feeling great is the ultimate goal anyway. Barb

Smiles from Barb!!

"If you want something you've never had...you must do something you've never done!"

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LORITOT's Photo LORITOT Posts: 379
4/26/11 6:50 P

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Hi Jenn,
Mine is a similar story...GI problems all my life (nausea, bloating constipation etc). After a really marked increase in the nausea I saw a GI doc who found intestinal damage similar to Celiac but I tested negative. He recommended stuff for the symptoms (a pill to increase GI motility, laxatives etc). I learned about gluten intolerance on my own and did an allergy diet on my own, removed all primary suspects and then reintroduced one at a time. I found remarkable changes when on and off gluten (as well as dairy). I took my findings to another GI doc and he agreed with me.

I have been GF/DF for 2 years and feel so much better. The occasions when I have gotten gluten by mistake I have had more drastic reactions which makes sense. The longer you are away from the offending item, the harder it hits you!

I think you are right to "go with your gut" however I do think you should look into a blood test/second opinion to r/o Celiac for sure (but you have to not have it removed from your diet before you do).
Good luck!

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GEOWAGS's Photo GEOWAGS SparkPoints: (26,248)
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4/26/11 12:50 A

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Hi Jenn,

You had mentioned an endoscopy, I had had one also but an endoscopy is not the be all, end all test for celiac disease. You really need a genetic blood test, one that will look to see if you have the genes for celiac disease and if they have been activated. There are 2 types, mine is Q12 and I don't remember what the other one is. Best of luck in your gluten free lifestyle. I have been living it for about 2 years and even though it's hard sometimes, it's not the end of the world, especially with all the attention to celiac and gluten allergies and the alternatives that so many companies and restaurants are coming up with.

George

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TELLITFORWARD SparkPoints: (10,826)
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4/26/11 12:19 A

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Jen, I went to a nutritionist/naturopath who diagnosed my gluten intolerance. I do not have celiac, nor does my daughter. Yet, if we eat even a bit of wheat, we get very ill, especially during other allergy high times. When the cottonwood, juniper and mullberry are blooming, my reaction to wheat gets way worse.
My DR. never even considered sensitivity, but when I told her what I've done, and why, she was fine with it. I still get cross contamination sometimes. I find that as long as I eat organic corn, I have no problem, but if I eat junk corn, I'm a wreck!
My thyroid has begun regulating itself way better since I went to organic milk and have upped my vitamin D to 5000 IU daily.
As far as reactions getting worse, yep! I got badly contaminated, because my husband didn't realize something had wheat in it, as he was told it was safe. I got a full blown yeast infection. Youch!
Also, remember that if food has been cooked with things containing gluten, you can have cross contamination. That's why I never eat French fries anywhere, as they are cooked with other things with breading or some gluten. It's just not worth it! The weight loss has only just begun after almost two years of eating this way. I'll take it!
Good luck!
Kathy

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DJ4HEALTH's Photo DJ4HEALTH Posts: 39,228
4/25/11 10:50 P

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HI and welcome to the team.

Dorothy





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LINDY115744 SparkPoints: (68)
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4/25/11 10:21 P

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I can speak to this. I have been allergic to so many things and especially wheaet, rye, barley, oats since I was 3 they said I would grow out of it by 7 then 14 then 21 etc. My automimmune system is all out of whack and instead of diahrea and losing weight. I had the opposite problem and gained weight. I was diagnosed with celiac 5 years ago and have felt so much better but not quite perfect. Still have trouble losing weight and have abdominal pain and sometimes hives. Family Dr. sent me to an allergist yet again though this time asked for a full food workup. It turns out that I'm allgergic to 48 other foods and additives. Since stopping those last week I feel a lot better and hope I can now get on the road to full weight reduction and good health.

You mentioned that your syptoms get worse the longer you are off offending foods. This is true your reactions will be more severe and last longer. It is vital to read every label and as my oldest son told me "Mom if it doesn't specifically say gluten free then do not eat it, period". Sometimes we can learn from our kids!

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4/25/11 8:25 P

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@Nancy-I saw a GI doctor for a while and all they ever did was prescribe pills. Pills for the constipation, diarrherea, abdominal pain. Never once did he ever look into food sensitivies. So, I just relied on trial and error. My husband noticed a HUGE improvement with the food changes. I have been doing it for quite a while faithfully. Spent last night racing to the loo after Easter dinner and I forgot to read the marinade label on the steak tips we ate. Oops. My symptoms last for days now as well.

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NANCYLEE46's Photo NANCYLEE46 SparkPoints: (96,448)
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4/25/11 8:18 P

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Jenn - have you seen a specialist? I have been following my gluten free diet pretty faithfully and I am still having difficulty with my body. I truly believe every individual's body reacts different and depending what other issues are going on it may complicate it.

My thyroid is having a difficult time being regulated and I can only think the celiac has something to do with this.

I would for sure get a 2nd opinion but also go with your gut - you do know your body best.

Nancy

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JENN03275's Photo JENN03275 SparkPoints: (33,101)
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4/25/11 7:51 P

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Hello! My name is Jenn and I am new to the team. I have had to self diagnose my gluten/wheat allergy on my own. Last April, while being treated for Lyme disease, I had to go on a special diet the basically took out breads, dairy etc. Backing up the bus, I have had issues with my gastrointestinal track for many many years. Going forward again, for the first time that I can remember my GI tract felt great. No abdominal pain, no bloating, no gas, no diarrhea/constipation. Once I completed the treatment for Lyme, I went back to eating my old way. All the symptoms came back. I started taking out gluten again and I started to feel really good again.

My PCP denies that I have a problem with gluten. About 4 years ago I had an endoscopy done and was negative for celiac. My PCP says because I don't have a rash, couldn't be celiac or gluten allergy. I decided that I am the one that is ultimately in control of what i put into my mouth, then i will just not eat it.

Now, every time I eat it or even now with some cross contamination, I get ill. I get major stomach pain and diarrhea, sometimes nausea and vomiting. Could I really have some underlying disease? Could it be since I have taken this out of my diet and my symptoms are getting faster and worse each time!

Thank you for reading my long post.

Jenn emoticon

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