How long did you go GF for? It can take from weeks to months to really see a change in some individuals. And did you consider teaming a GF diet with a dairy-free one? I know it sounds drastic, but 50% of those who react with antibodies to gluten find those antibodies cross-react to the casein protein in dairy.
You might also want to consider doing a food intolerance panel such as the ones offered by Enterolab or Genova. They're excellent for finding things when other less specialized blood tests don't.
Also understand that it can take up to 10 years for histological/endoscopic confirmation of a diagnosis of celiac disease. The symptoms can make life totally miserable and it's only when other symptoms like brain-fog, rashes, peripheral neuropathy and such show up does an endoscopy pop positive.View Thread
It's very possible. Celiac and even the 'lesser' gluten-sensitive issues can cause whole body pain and a host of other symptoms that mimic diseases like fibromyalgia, RA, etc.
If your wife hasn't been tested for either celiac disease or gluten sensitivity, have her do it. Make sure the tests that are used are more than just the blood tests that are done by the usual blood labs. They're just not good enough to find the issues. In many cases the markers don't go systemic until long after the symptoms start - for many it can take up to 10 years to be correctly diagnosed. Consider doing fecal antibody tests by a lab like enterolab. Or do the gene test that will tell you whether or not the genes are present. If the genes are there and symptoms are present, halt gluten immediately. Docs say the only 'gold standard' is the biopsy, but even that can take a long, long time to show a positive result - and until it does patients suffer every day.
If she doesn't want to test, have her take all gluten (wheat, rye and barley) out of her diet for at least 4 weeks and see if any changes are found. If they are, she's got an answer.View Thread
It could be pancreatic, but it could also be stomach related. Have you discontinued drinking? If not, do so. How about finding out the cost of having some blood work done? Check to see if a clinic, doctor, or hospital near you can give you a hand getting that done since it's going to be an important aspect in knowing what's going on. Pancreatic issues are nothing to gloss-over as you already know, so if the discomfort is due to a malfunction of that organ you need to take lifestyle and possibly medical steps to change the situation around.
There's really no easy answer I know of in this situation.View Thread
Snmack, are you carefully watching your gluten intake? And have you made sure that you aren't consuming any 'hidden' gluten? Have you been checked for cross-reactivity to substances such as casein, the major protein in diary? As many as 50% of those with celiac can cross-react and it can result in miserable problems.View Thread
Alan, fecal transplantation in Italy many years ago led to development of a probiotic called VSL#3. It has been very successful in helping those with U.C. You may want to check into its use in clinical trials. I believe many of the papers can be accessed on Medscape.
Fecal transplants are now being used in the U.S. for treatment of C. diff, but I've not heard of it's use for anything other than that.View Thread
Then I added wheat in and we had our answer. I went gluten free and really did not believe the allergist when he said symptoms other than the IBS would go away, but after about 6 months I was able to RUN upstairs, the first time I did it I didn't realize what I did till I got to the top and sat there and cryed for about a half hour. My migraines were gone, my joint and muscle pain were gone although the damage to the joints remains of course. Best of all I am free of the depression and difficulty thinking that I had before. I even knitted this winter and was able to follow a pattern. I am an extreme case of misdiagnosis, I never showed positive on blood tests, but I have learned there are many that share it, and still do. -- Kris - celiac 49 years -misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias and arthritis All resoved with proper diagnosis of Celiac November 2002 Children 2 with Ulcers, Depression, Aspergers, both finally diagnosed Celiac 6 months later Husband just gassy and spacey (autistic), diagnosed 2006
P.S. How could I forget the parathesia, that began also after my DD was born, they thought I had carpel tunnel and did surgery with only temporary relief. Then a neuro said it was because I drank heavily at 16 when my twin died, this was 30 years before the pins and needles started. I also lost at least half my hair and went into an early menopause complete with hot flashes and night sweats.[br>[br>View Thread
Kris said: Well here goes, and you are welcome to share this with anyone it might help.
My first gluten intolerance symptoms began in childhood at about 6 after I was impaled, Mom wasn't home so I had to basically save myself, scared a neighbor to death when I knocked on her door. But after that was when I first became ataxic and the blisters started showing up. This was also when the intermittant joint and muscle pain and migraines started. At 10 I had surgery on both legs to correct congenital malformations, they discovered nerve problems in my lower legs and I got months of PT to learn to walk again. By my teen years my ataxia was so bad I began skimming walls, the blisters cleared and severe acne set in. I had also by this time started stuggling with depression and what we call brain fog. Things leveled off until I lost my first child, then the IBS hit. After the birth of my youngest symptoms really excaberated. My depressive episodes became more frequent and they were joined by explosions of temper that had no reason. I was diagnosed with a sub-illeal seizure disorder and put on valporic acid. This drug made me manic but the doctors thought I was getting better, I left my husband and purchased a succession of cars and generally acted nuts till I stopped the drug. Then the fun really began. The ataxia progressed furthur until even walking was difficult, the intermittant joint and muscle pain became constant and joint destruction became visable and I was told I had fibromyalgia and arthritis. They found during x-rays that I had osteoporosis (at 40) My thought process became severely effected, sometimes even the names of common things slipped by. If I need a fork I would ask someone to get that thing inside that thing and point. I was a head chef at the time and had to call for stuff I needed. It was easier to just get it myself it took less time. Around this time I also had a few episodes of getting into my car and not remembering how to start it. I also started to lose control of my bowels and bladder. To say I was scared was an understatement. My IBS was now daily but still not painful and I tended to begin each doctor appointment with 'oh and I still have D' I was told to just keep taking immodium a few times a day. I then got salmonella from Long John Silvers shrimp, the doctor was so used to hearing about my 'upset tummy' that she insisted I had a virus, I lost 20 lbs off a 110 lb frame in 4 days but she still thought it was a virus, this delayed diagnosis of the sammy for 2 weeks. the the s--t really hit the fan. The IBS wasn't painless anymore and I would see blood now and then. Doctor put me on an anticholeragenic with valium and the nightly 3 hour bouts of dizzy, gut wrenching pain and D began. Joints got so painful I couldn't even hold a coffee cup and I had to use canadian canes to walk. I was sent to a surgeon who refferred me to a PT in preperation for surgery to try and correct the incontinence issue. The PT insisted I go see an allergist, he skin tested me and the only thing not positive was beech trees! He also started me on the elimination diet and saved my life. The D was gone a week into the diet, for the first time in 15 years, I thought I'd gone to heaven. (continued)View Thread
Tyr74, it's from watching the progression of the gluten issues in those that we work with at the office and in talking to those who have finally been diagnosed with gluten issues.
It's also the experience of those who previously posted on the WebMD boards before they changed the formats several times over the last few years. The older posters drifted away, which is a shame. Let me go back and see if I can find an older post by Kris that mentions what she went through. It might be 'enlightening' for you.View Thread