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Patty55

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Patty55 Rookie
Patty55
Posted

Hello to everyone from whom I have learned so much in the past few days and thank you! Since going to Mexico 2 1/2 months ago I have been sick and sicker, finally hospitalized. CT of pelvis showed a lot of inflammations from pylorus to jejunum and I was given a probable diagnosis of Crohn's. Went home feeling weak on a low fiber diet. Started going online to different sites and forums. Spent a week with the Crohn's group (who REALLY have it bad) and did not feel this was the same. Then saw a 2nd Primary who has more on the ball & said why didn't they test for Celiac's or GB? So I just had the panel drawn & spent a day reading posts from people who have been driven to near insanity with the same strange symptoms I had. Since I had felt better on the low fiber diet but didn't realize I was avoiding wheat, it hit me after thinking it was ok to eat a sandwich with multigrained bread! All the weakness, malaise and pains were back again! I am so greatful to have read how much time it might or might not take to feel better! I don't care if the panel comes back negative now. I only know how immediately (well, within 12 hrs) I felt like my old self. I am hoping to schedule an endoscopy & colonoscopy with biopsies anyway, and will be trying to get a better fix on a gluten-free lifestyle. Thanks again! --Patty

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Guest nini
Guest nini
Posted

welcome to the board, ask any question that may come up, no question is too silly or stupid, as we've all been there!

jenvan Collaborator
jenvan
Posted

Patty-

Welcome ! We are glad you're here. Please let us know when you get the final diagnosis. Also--if you have Crohn's (you can have both Crohn's and Celiac too), you should definitely read up on the SCD-Specific Carbohydrate diet. If its something you want to pursue at some point, there are quite a few here on the diet. It is a diet that restricts gluten in addition to most carbs--carbs that take the body longer to break down, thereby encouraging bacterial growth and balance upset in the gut. Below are some links to sites that explain the diet: Open Original Shared Link, Open Original Shared Link, Open Original Shared Link I like posting the amazon site for the book b/c there are about 160 reviews you can read--most of them all 4 stars and people who have experienced great improvement, healing or remission from Crohn's, Colitis, IBD...and Celiacs who have had improvement that made too slow of progress or incomplete recovery on the gluten free diet alone. If you have Celiac, the time for improvement really varies person to person--some feel better immediately, others it takes some months. Either way, the gluten free diet is totally doable...and if you have any questions or issues, you can ask away here.

jaten Enthusiast
jaten
Posted

Welcome! Sounds like whether you have Celiac or not, you're certainly gluten-intolerant. Whatever your tests reveal, welcome to this board and to the gluten-free life.

evie Rookie
evie
Posted

[ :rolleyes:

Welcome to a very helpful board!! I have been here less than a month but have learned so much that has made my bad days easier!! do not be too surprised if your biopsy does not show celiac but many of us are getting better on the gluten free diet. this is a very caring and helpful group, scott included. My blood tests showed a gluten problem 3 months ago and improvement has been slow for me. My dr. diagnosed me as "presumed celiac" until I go on gluten again and have another biopsy. Not sure i want to do that???

you came to the RIGHT place.. Again welcome newcomer!! evie :)

tarnalberry Community Regular
tarnalberry
Posted

welcome to the board!

mouse Enthusiast
mouse
Posted

Welcome to the board. I was gluten-free for over a year when I finally joined. I learned more here then the 300 plus hours of research that I had done prior to joining. This is a very helpful forum and ask away with any questions.

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Patty55 Rookie
Patty55
Posted
  • Author

Thank you so much the welcomes and I WILL be asking questions. Fortunately, you've answered some already before I thought of them! I went out and bought my first loaf of brown rice bread (as a life without sandwiches sounds messy) and pasta today. I feel like I have a new pet!

A little disappointed to learn that a biopsy, too, can be inconclusive for celiac, but I can figure no other reason to be having a pretty calm stomach, NO headaches or weakness in just two days. Can you tell me if a blood test for gluten is different from a celiac panel? Thanks also for the SDC diet and the Amazon sites! I can't believe anyone wouldn't need a book but have cut and pasted many recipes and shopping advice from this site already. :rolleyes:

Thanks again everyone!

Patty

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    • trents
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By trents · Posted

      The blood tests you had done are not the main ones. The two main ones are the "Total IGA" (to check for IGA deficiency) and the "TTG-IGA". Current guidelines for the "gluten challenge" when people have been gluten free for a significant time period are the daily consumption of at least10g of gluten (about the amount in 4-6 slices of wheat bread) for at least two weeks leading up to the day of the blood draw. That should give you some perspective.
    • Xravith
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By Xravith · Posted

      Thank you, really.  I took a test for DGP-IgA and DGP-IgG. Effectively, it is not enough to discard Celiac Disease. I was consuming gluten until then, I only started gluten-free some days ago, when the symptoms became horrible and now I feel considerably better, which is a second confirmation that gluten is the main problem. It's been more than 4 years I have the same suspect, when I first thought gluten was causing me problems, I made a gluten-free diet for a year, I felt really good as never before. However, neither I or my parents were well informed about Celiac disease, so none of us tried to make further exams. My father suffer digestive problems and other members of my family as well. Unfortunately, no one have ever been tested for Celiac disease. I'll have to restart eating gluten in the next weeks, so I can make a serious blood test in laboratory, hopefully between two or three months.
    • trents
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By trents · Posted

      As Scott said, in order for celiac disease testing to be valid, you need to be eating generous amounts of gluten on a regular basis for weeks or months before the blood draw. The blood tests are designed to detect antibodies that the immune system produces in response to the ingestion of gluten. It takes time for them to build up in the blood to detectable levels.
    • Scott Adams
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By Scott Adams · Posted

      Based on what you've described, it is absolutely crucial that you pursue further medical exams for Celiac Disease and related conditions with a gastroenterologist. Your symptoms—especially the worsening fatigue, loss of muscle mass, neurological symptoms like migraines, and palpitations, coupled with being underweight—are significant red flags that extend beyond typical IBS. The negative home test is not reliable, particularly given your concern about sample contamination and the fact that you were likely not consuming sufficient gluten at the time for the test to be accurate, which is a common issue. While probiotics like Bifidobacterium Infantis can support gut health, they cannot resolve an autoimmune response to gluten or heal intestinal damage caused by Celiac Disease. Your declining blood test results, even if still "in range," further indicate a trend that needs a doctor's investigation. Please do not hesitate to seek a specialist; a formal diagnosis is the first step toward getting the correct treatment, allowing your body to heal, and finally addressing your weight and overall health concerns. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
    • Scott Adams
      Buckwheat

      By Scott Adams · Posted

      I would only add that cross contamination with wheat may still be a possibility, so it's still best to seek out buckwheat that is labeled "gluten-free."
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