Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Celiac.com!
    eNewsletter
    Donate

The Results Are In...

goldyjlox

By goldyjlox
in Coping with Celiac Disease

Recommended Posts

goldyjlox Contributor
goldyjlox
Posted

I got my resutls today and turns out I have Severe Celiac Disease and my body is showing signs of early Osteoporosis. Not that I have this but I need to change my diet or I could have it. He said my Villa were flattened, I dont eat hardly and Gluten so I am shocked by this. He also wants me to go off Dairy for awhile and let my body heal. I have never had any problems with dairy and I do consume it alot. But he did say I could have that small amount in my tea still. So I have alot to learn now and I am totally lost and ned to do alot of studing. He actually suggested I research this site instead of buying a book, but I am interested in getting a book or two as I have small children and dont always get time on the computer. CAn anyone suggest any good books?? I am thinking of ordering the "living gluten free for Dummies" Also is there any cheat guides that tell you what products in the grocery stores are gluten free??? I live in a small town and there is not alot of opportunity to shop. I stopped by a Whole foods today and they had alot of stuff but I did not buy anything as I did not get to my appt. at that time. Oh and also what age did you get your kids tested?? Mine are 3 1/2 and 11 months but the doctor said that there was no rush to get them tested. I was thinking of adding the gluten free diet to theirs are it probably wouldnt hurt.

Thanks.

Link to comment
Share on other sites
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


cyberprof Enthusiast
cyberprof
Posted

Hi Goldy - Great Name!

Welcome! I'm sad that you've got a severe case but your doc sounds marvelous, compared to mine and other stories I've heard here. It's great that he recommended this site, too!

Living Gluten Free for Dummies is a great way to get started if you want a book. Peter Green M.D. also has a good celiac book that you could read. The Gluten Intolerance Group GIG publishes a "cheat guide" notebook.

I don't think that there is any risk in putting your kids on a gluten free diet, it may help them to learn that way of eating and not miss it later. The only disadvantage is that you would have to put them ON gluten to test them, and that might not be a fun experience, but you can cross that bridge when you get to it. If you think of how sick you are, what I've heard is that kids can get much sicker. My one IRL friend whose daughter was diagnosed at around age 3 said that her daughter was close to dying she was so sick.

I hope you feel better soon. I still put milk in my tea (I can't live without my English-style hot tea in the morning with milk and sugar) right after diagnosis, although I gave it up otherwise for 6 months. I'm ok with a bit more now.

I got my resutls today and turns out I have Severe Celiac Disease and my body is showing signs of early Osteoporosis. Not that I have this but I need to change my diet or I could have it. He said my Villa were flattened, I dont eat hardly and Gluten so I am shocked by this. He also wants me to go off Dairy for awhile and let my body heal. I have never had any problems with dairy and I do consume it alot. But he did say I could have that small amount in my tea still. So I have alot to learn now and I am totally lost and ned to do alot of studing. He actually suggested I research this site instead of buying a book, but I am interested in getting a book or two as I have small children and dont always get time on the computer. CAn anyone suggest any good books?? I am thinking of ordering the "living gluten free for Dummies" Also is there any cheat guides that tell you what products in the grocery stores are gluten free??? I live in a small town and there is not alot of opportunity to shop. I stopped by a Whole foods today and they had alot of stuff but I did not buy anything as I did not get to my appt. at that time. Oh and also what age did you get your kids tested?? Mine are 3 1/2 and 11 months but the doctor said that there was no rush to get them tested. I was thinking of adding the gluten free diet to theirs are it probably wouldnt hurt.

Thanks.

Link to comment
Share on other sites
happygirl Collaborator
happygirl
Posted

There are a lot of good things about your post.

1. You have a firm diagnosis...no more wondering.

2. Your doc suggested this site. :)

I would highly recommend the book listed in my signature. Its absolutely wonderful.

All first degree relatives should be screened via bloodwork...parents, kids, siblings. Your 3.5 year old is old enough for reliable testing. I'd have it done. Make sure you get the full panel run. Also may be worth running the gene test on them, so you know if it is a possibility (genetically pre-disposed or not) in the long run.

Link to comment
Share on other sites
miles2go Contributor
miles2go
Posted

1. Breathe.

2. You're in a safe place with this website.

3. Grieve your former diet, it's a learning curve and after a while it will become second nature.

4. Everyone will think you are weird, but you don't have to tell them if you don't want to.

5. The kids won't even notice.

6. There's this cool book called the "The Ultimate UnCheese Cookbook: delicious dairy-free cheeses and classic "un-cheese" dishes"/ Jo Spepaniak.

:)

Margaret

Link to comment
Share on other sites
gfpaperdoll Rookie
gfpaperdoll
Posted

your children will definitely be healthier on the gluten-free diet, no need to feed them gluten until their villi flatten!!!!! Not a good idea.

Not a good idea to cheat on dairy - especially when the villi are flattened, I am sure that you can find something else like almond milk or something... You will read in most of these books how bad dairy really is for you. & you do not need dairy to build strong bones, that is just a saying that we all bought into... Also, you do not need soy.

I recommend a couple of books, Dangerous Grains, by James Brady MD & Ron Hoggan, & The Paleo Diet & Eat Right for your blood type (not gluten-free but helpful if any problems with other food intolerances), in addition to the books that were already recommended to you. They are all excellent. Another book that I like - it is not a gluten-free book but is a good refresher on nutrition is the book "Super Foods" by Steven Pratt, MD.

Also just a suggestion but I highly recommend that you go more Paleo - whole foods & not eat the replacement grains for at least 6 months to a year.

Link to comment
Share on other sites
Guest j_mommy
Guest j_mommy
Posted

Great for you to finally know!

Yes I would have your 3.5 yr old tested...I had my son tested at 2 and he's neg. but he's gluten light...no gluten at home!

I would also recommend...Living gluten free for Dummies and Celiac Disease: a Hidden Epidemic(I bought them togther off Amazon for 30 for teh pair!)

Good Luck!

Link to comment
Share on other sites
goldyjlox Contributor
goldyjlox
  • Author
Posted

I think that so far I am doing well with no gluten, I have been writing down everything I eat so that I can keep track of any gluten I may get. I am failing at the no dairy....its in everything also, I have researched some and found some butter that it dairy free... I beleive its called Fleishmanns, and Earth Balance and also Nucoa....not sure where I am going to find that here in our small town. I am going to make an appt with the dietition on monday and see if she can help me. Any good non dairy milks that you can suggest?? I am a HUGE milk drinker, so this is going to be more difficult to drop then the gluten.

Thanks.

Link to comment
Share on other sites
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


hathor Contributor
hathor
Posted

I won't repeat the great advice you've been given. I just wanted to add that Whole Foods has a list of gluten free foods they carry. Just ask at the customer service desk.

If you look at the product area on this web site, you can order guides to what is gluten-free or not. I have the Clan Thompson books, but I find I don't really use them much.

Better than any list, I think, is getting into the habit of reading labels. The first few times you are in the grocery store it will take forever, but that can't be helped. Contact manufacturers if you aren't sure.

Be wary of any item that says it is manufactured on the same equipment as wheat. Some seem to have problems with those. But realize that these labels are voluntary. If you do find you are reacting to a food without such a label, check it out.

You do know not to eat oats, right?

Be sure to get rid of any wooden items in your kitchen that came into contact with gluteny food; apparently it is impossible to wash the stuff completely. Avoid cross-contamination, like gluteny crumbs in the toaster or the PB. Don't lick envelopes (the glue might contain gluten). Check out all medicines and supplements you take -- there is no labeling requirement similar to food so you may need to ask us or contact manufacturers. Finally, I think it is wise to check your personal care items for gluten. I just realized 10 days ago I had been smearing wheat on my hair. No it doesn't absorb up there, but it gets on my hands, my hands go in my mouth, etc.

There are plenty of milk alternatives -- soy, rice, almond, oat, and hemp being the ones that come to mind.

Link to comment
Share on other sites
hathor Contributor
hathor
Posted

Here's a link that will help you with label reading:

https://www.celiac.com/st_main.html?p_catid...-51107454617.e3

Link to comment
Share on other sites

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      121,088
    • Most Online (within 30 mins)
      7,748
    Aventine
    Newest Member
    Aventine
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Anmol
      Recently Diagnosed Celiac- Need advice

      By Anmol · Posted

      Thanks this is helpful. Couple of follow -ups- that critical point till it stays silent is age dependent or dependent on continuing to eat gluten. In other words if she is on gluten-free diet can she stay on silent celiac disease forever?    what are the most cost effective yet efficient test to track the inflammation/antibodies and see if gluten-free is working . 
    • trents
      Recently Diagnosed Celiac- Need advice

      By trents · Posted

      Welcome to the community forum, @Anmol! There are a number of blood antibody tests that can be administered when diagnosing celiac disease and it is normal that not all of them will be positive. Three out of four that were run for you were positive. It looks pretty conclusive that you have celiac disease. Many physicians will only run the tTG-IGA test so I applaud your doctor for being so thorough. Note, the Immunoglobulin A is not a test for celiac disease per se but a measure of total IGA antibody levels in your blood. If this number is low it can cause false negatives in the individual IGA-based celiac antibody tests. There are many celiacs who are asymptomatic when consuming gluten, at least until damage to the villous lining of the small bowel progresses to a certain critical point. I was one of them. We call them "silent" celiacs".  Unfortunately, being asymptomatic does not equate to no damage being done to the villous lining of the small bowel. No, the fact that your wife is asymptomatic should not be viewed as a license to not practice strict gluten free eating. She is damaging her health by doing so and the continuing high antibody test scores are proof of that. The antibodies are produced by inflammation in the small bowel lining and over time this inflammation destroys the villous lining. Continuing to disregard this will catch up to her. While it may be true that a little gluten does less harm to the villous lining than a lot, why would you even want to tolerate any harm at all to it? Being a "silent" celiac is both a blessing and a curse. It's a blessing in the sense of being able to endure some cross contamination in social settings without embarrassing repercussions. It's a curse in that it slows down the learning curve of avoiding foods where gluten is not an obvious ingredient, yet still may be doing damage to the villous lining of the small bowel. GliadinX is helpful to many celiacs in avoiding illness from cross contamination when eating out but it is not effective when consuming larger amounts of gluten. It was never intended for that purpose. Eating out is the number one sabotager of gluten free eating. You have no control of how food is prepared and handled in restaurant kitchens.  
    • knitty kitty
      14 year old with Celiac & EOE still suffering...

      By knitty kitty · Posted

      Forgot one... https://www.hormonesmatter.com/eosinophilic-esophagitis-sugar-thiamine-sensitive/
    • trents
      50 YO Male Recently Diagnosed with Celiac Disease

      By trents · Posted

      Welcome to the forum community, @ekelsay! Yes, your tTG-IGA score is strongly positive for celiac disease. There are other antibody tests that can be run when diagnosing celiac disease but the tTG-IGA is the most popular with physicians because it combines good sensitivity with good specificity, and it is a relatively inexpensive test to perform. The onset of celiac disease can happen at any stage of life and the size of the score is not necessarily an indicator of the progress of the disease. It is likely that you you experienced onset well before you became aware of symptoms. It often takes 10 years or more to get a diagnosis of celiac disease after the first appearance of symptoms. In my case, the first indicator was mildly elevated liver enzymes that resulted in a rejection of my blood donation by the Red Cross at age 37. There was no GI discomfort at that point, at least none that I noticed. Over time, other lab values began to get out of norm, including decreased iron levels. My PCP was at a complete loss to explain any of this. I finally scheduled an appointment with a GI doc because the liver enzymes concerned me and he tested me right away for celiac disease. I was positive and within three months of gluten free eating my liver enzymes were back to normal. That took 13 years since the rejection of my blood donation by the Red Cross. And my story is typical. Toward the end of that period I had developed some occasional diarrhea and oily stool but no major GI distress. Many celiacs do not have classic GI symptoms and are "silent" celiacs. There are around 200 symptoms that have been associated with celiac disease and many or most of them do not involve conscious GI distress. Via an autoimmune process, gluten ingestion triggers inflammation in the villous lining of the small bowel which damages it over time and inhibits the ability of this organ to absorb the vitamins and minerals in the food we ingest. So, that explains why those with celiac disease often suffer iron deficiency anemia, osteoporosis and a host of other vitamin and mineral deficiency related medical issues. The villous lining of the small bowel is where essentially all of our nutrition is absorbed. So, yes, anemia is one of the classic symptoms of celiac disease. One very important thing you need to be aware of is that your PCP may refer you to a GI doc for an endoscopy/biopsy of the small bowel lining to confirm the results of the blood antibody testing. So, you must not begin gluten free eating until that is done or at least you know they are going to diagnose you with celiac disease without it. If you start gluten free eating now there will be healing in the villous lining that will begin to take place which may compromise the results of the biopsy.
    • Anmol
      Recently Diagnosed Celiac- Need advice

      By Anmol · Posted

      Hello all- my wife was recently diagnosed with Celiac below are her blood results. We are still absorbing this.  I wanted to seek clarity on few things:  1. Her symptoms aren't extreme. She was asked to go on gluten free diet a couple years ago but she did not completely cut off gluten. Partly because she wasn't seeing extreme symptoms. Only bloating and mild diarrhea after a meal full of gluten.  Does this mean that she is asymptomatic but enormous harm is done with every gram of gluten.? in other words is amount gluten directly correlated with harm on the intestines? or few mg of gluten can be really harmful to the villi  2. Why is she asymptomatic?  3. Is Gliadin X safe to take and effective for Cross -contamination or while going out to eat?  4. Since she is asymptomatic, can we sometimes indulge in a gluten diet? ----------------------------------------------------------------------------------------------- Deamidated Gliadin, IgG - 64 (0-19) units tTG IgA -  >100 (0-3) U/ml tTG IgG - 4   (0-5) Why is this in normal range? Endomysial Antibody - Positive  Immunoglobulin A - 352 (87-352) ------------------------------------------------------------------------------------------------ Thanks for help in advance, really appreciate! 
×
×
  • Create New...