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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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      Thoughts? Non-endoscopic Celiac diagnosis in two year old

      By Samanthaeileen1 · Posted

      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
    • Wheatwacked
      Thoughts? Non-endoscopic Celiac diagnosis in two year old

      By Wheatwacked · Posted

      My son was diagnosed when he was weaned in 1976 after several endoscopies.  Given your two year old's symptoms and your family history and your pediatrition advocating for the dx, I would agree.  Whether an endoscopy is positive or negative is irrelevant.   That may happen even with endoscopy.  Pick your doctors with that in mind. In the end you save the potential trauma of the endoscopy for your baby.   Mine also had really nasty poop.  His doctor started him on Nutramigen Infant because at the time it was the only product that was hypo allergenic and had complete nutrition. The improvement was immediate.
    • RMJ
      Thoughts? Non-endoscopic Celiac diagnosis in two year old

      By RMJ · Posted

      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
    • Samanthaeileen1
      Thoughts? Non-endoscopic Celiac diagnosis in two year old

      By Samanthaeileen1 · Posted

      here are the lab ranges.  Normal ranges for tissue transglutaminase are: <15.0 Antibody not detected > or = 15.0 Antibody detected normal for endomysial antibody is < 1.5. So she is barely positive but still positive. 
    • JoJo0611
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      By JoJo0611 · Posted

      I have been diagnosed with coeliacs disease today after endoscopy, bloods and CT scan. I have also been diagnosed with Mesenteric Panniculitis today. Both of which I believe are autoimmune diseases. I have been told I will need a dexa scan and a repeat CT scan in 6 months. I had not even heard of Mesenteric Panniculitis till today. I don’t know much about it? Has anyone else got both of these. 
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