Celiac.com Sponsor (A1):


Join eNewsletter


Celiac.com Sponsor (A1-m):



Join eNewsletter

Archived

This topic is now archived and is closed to further replies.

Janie*

I Have Been Gluten-free For 3 Years And I Am Getting Sick...

Recommended Posts

Hi! This is my first post. I am 23 and have been gluten-free for 3+ years. After adjusting to the diet I felt better than ever before. Recently, however, I get terrible stomach pains after I eat anything. They feel like the pains I get when I accidentally ingest gluten, but I never intentionally eat gluten and I am very cautious about contamination. I am experimenting with the Paleo diet right now to see if I can discover any other allergies I may have. If anyone has and suggestions/comments or advice, it would be much appreciated. I feel like I did before I was diagnosed with Celiac and it is terrible!


Janie*

Diagnosed and gluten free since July '04

Share this post


Link to post
Share on other sites

Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8):


I don't really have any solid advice.

I know gluten, dairy and soy are the top food offenders. I don't know how you feel about doctors but if you cut out foods and still have the same problem you should probably been seen.

It seems any intolerance can cause stomach pain, but it shouldn't be with every meal unless you're eating the same food groups. My daughter is intolerant to (among other things) citrus. She can't handle lemon juice but does ok with orange occassionaly. She gets stomach pain when she eats something she's intolerant to. An intolerance reaction can present as soon as 1/2 hour to as long as 2-3 days. The reaction usually resolves by then. If you are eating an offending food frequently (say dairy) then the reaction would be ongoing. Let's say you have milk with breakfast, cheese with lunch and butter with dinner. If your intolerant to dairy you will have an ongoing reaction since dairy is consumed with each meal. Plug in any food here that's eaten frequently.


Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.

Share this post


Link to post
Share on other sites

I would try to eliminate all foods one by one. First take dairy out, if no change take something else out. Keep going until you find out what it is, because of the caseine in dairy it has similarities to gluten reaction.

And welcome to the board Janie.


Rusla

Asthma-1969

wheat/ dairy allergies, lactose/casein intolerance-1980

Multiple food, environmental allergies

allergic to all antibiotics except sulpha

Rheumitoid arthritis,Migraine headaches,TMJ- 1975

fibromyalgia-1995

egg allergy-1997

msg allergy,gall bladder surgery-1972

Skin Biopsy positive DH-Dec.1 2005, confirmed celiac disease

gluten-free totally since Nov. 28, 2005

Hashimoto's Hypothyroidism- 2005

Pernicious Anemia 1999 (still anemic on and off.)

Osteoporosis Aug. 2006

Creative people need maids.

Share this post


Link to post
Share on other sites
I would try to eliminate all foods one by one. First take dairy out, if no change take something else out. Keep going until you find out what it is, because of the caseine in dairy it has similarities to gluten reaction.

And welcome to the board Janie.

Thank you all for your advice. I think I will go to the doctor soon if I can't manage to work it out by elimination. Feels good to know there are others in similiar situations..none of my family members have been diagnosed and my friends are all allergy free. Go figure!


Janie*

Diagnosed and gluten free since July '04

Share this post


Link to post
Share on other sites

You could also get the ELISA IgE/IgG test. My doctor uses US Biotek. We did that with our family. You can get false positives and well as false negatives with those but it gives you something to start with, if you want to spend the money.


Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.

Share this post


Link to post
Share on other sites

I went through a period like this myself. My GI told me to take accidolpulus (sp?) and digestive enzymes and I can't believe how much that has helped out.

Good luck!


2010- Gluten, Soy, Corn, Dairy, Eggs, Nut free. Sugar, non-gluten grains lite(Yes, still plenty to eat!)

2010-Doctor diagnosed me as Celiac then took diagnoses back, then said avoid gluten for life

2009

Share this post


Link to post
Share on other sites

While other intolerances are certainly a possibility you should also be a gluten detective for a bit. Have you changed any soaps or toiletries, changed makeup, taken up a hobby or craft that uses paints, glutes, clays, cements, are you doing any remodeling? Many times when symptoms sneak back in on me it is due to a cross contamination issue with a mainstream product that I thought was gluten-free.

If you need to do an elimination diet the best way to do one is with the guidance of an allergist. Many do them backwards by trying to eliminate one food that may unknowingly be in much other stuff. A true elimination diet starts with skin tests for actual allergies and a questionaire about what you usually eat. Then the doc picks 5 or 6 non reactive foods that will provide all the nutrients you need to start and then a new food is added in pure form one at a time once a week to check for a reaction. It is boring, and time consuming but in the long run can be very beneficial. It can be difficult to find an allergist so don't give up if the first office you call says they can not help you.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

Share this post


Link to post
Share on other sites
I went through a period like this myself. My GI told me to take accidolpulus (sp?) and digestive enzymes and I can't believe how much that has helped out.

Good luck!

Dear Looking for answers,

I take acidophillus. I can definately tell a difference when I do not take it. I may have a yeast overgrowth, too. That can really wreak havoc on your digestive system. If you have that, a gluten free diet will only help temporarily, but then you begin feeling bad again. I still am gluten free, but it is not relieving the symptoms as well as it had been the first few months due to the yeast.

Dear Janie,

I am close to your age. I am 24. I just went gluten free about five months ago. I second the acidophillus. The paleo diet could be hard on your system, though. If you are not used to the fiber, especially from the seeds, it can really be rough on your stomach. My doctor wants me to do a rotation diet. She thinks I may have more food sensitivities. Other possibilities include gallbladder problems, or an overgrowth of yeast. For instance, with yeast, if you were on a lot of antibiotics, steroids, or birth control, crave sugar, have PMS, migraines, mood swings, food allergies, and have digestive problems like gas, reflux, diarrhea, constipation, and/or nausea, it is likely.

Sincerely,

NoGluGirl


Jin

Strawberry Allergy, mold allergy, dustmites allergy, ragweed allergy, dust allergy, food dye allergy - 1985

Asthma - 1994

Ovarian Cyst - May 1999

Anemia - 2000

4 More Ovarian Cysts - March 2000

Bloodwork for Celiac - November 2000 negative

Colonoscopy, Endoscopy, Intercolisis, Gastric Emptying Study - May and June 2001 negative biopsy

Fibromyalgia - June 2001

IBS - June 2001

Gallbladder Removal - July 28, 2003 after doctor said the tests showed nothing, so it was not gallbladder disease. It was very inflamed and irritated and nearly ruptured the surgeon told me at my 10 day post-op check-up.

Thyroid Disease - August 2004

Celiac Disease - March 2007 Current Dr. refers to me as Celiac, as she says blood tests are often inaccurate.

Official Purple Glittery Bat Keeper, District Attorney, and Chinese Restaurant Owner of The Silver Dragon of Rachelville

Share this post


Link to post
Share on other sites

Many traditional GIs know little to nothing about other food intolerances, so if yours doesn't, it might be worth it to see an allergist, as some of them are more familiar with intolerances.

Have you had the Celiac blood panel re-run recently to determine if gluten is potentially part of the problem (i.e., hidden gluten). It might be worth it to know if your scores are elevated or normal before you go down another path.

Laura

Share this post


Link to post
Share on other sites