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Diagnosed Last Night

AWebb85

By AWebb85
in Meet Up Room

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AWebb85 Newbie
AWebb85
Posted

Hey everyone, I'm Aaron. I am 25 and live in Glendale AZ. I am new to the Celiac Family. Today was difficult looking in my fridge and pantry and realizing I can't eat almost anything in either. Happy to have a place where I can connect with similar people.

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Dixiebell Contributor
Dixiebell
Posted

Welcome to the forum! It is hard to start with but it will be second nature soon. Ask any questions you need. there are some very smart people here.

Emilushka Contributor
Emilushka
Posted

Hi! I'm also a relatively new member of the group. I got my results back on 9/10, and I've been gluten-free ever since. Almost a whole month.

My fiance eats gluten still. My strategy has been to separate our food out in the kitchen so that his food will not get crumbs on my food and I will have my own areas to maintain and stock. This means that I can easily see what I can and cannot eat, or what can and cannot go into something I am cooking. I find this really helpful.

If you're living with others who eat gluten, make sure you're not sharing nonstick pans, nonstick utensils, or wooden utensils. It's wise to invest in a rice cooker, your own toaster oven, and a good cast iron skillet (that will forever be gluten free).

My biggest recommendation: learn to cook WELL. If you can keep making tasty foods you like to eat, it'll feel like you're giving up a lot less. My sad days are when I think of what I can't have. My happy days are when I realize I just made something delicious that incidentally had no gluten - and it makes my body feel great to have the good stuff.

lucia Enthusiast
lucia
Posted

It's true what they say - the diet will fall into place for you after awhile. I went through the exact same process that you describe - going through my cupboards and ending up discouraged. I'd encourage you to take a look at the recipe section on the site and also maybe to search for "ideas for breakfast," "ideas for lunch," etc. It's helpful to draw on other people's experience when planning meals. Honestly, after a few months, I think the hardest thing about the gluten-free diet is eating outside of the house, but that's a whole other hurdle for you. Welcome!

AWebb85 Newbie
AWebb85
Posted
  • Author

Thanks for the kind words and information. I am starting to see just how many gluten free options there really are out there. My fiance is being very considerate and is going to try to only eat gluten free, at least at home. I am feeling a lot better about the whole idea and am excited to finally start feeling better!

  • 2 weeks later...
Foxx Newbie
Foxx
Posted

Thanks for the kind words and information. I am starting to see just how many gluten free options there really are out there. My fiance is being very considerate and is going to try to only eat gluten free, at least at home. I am feeling a lot better about the whole idea and am excited to finally start feeling better!

Welcome and, I am new here as well.

Wal-Mart has a list (on their site) that details all of the Gluten Free products they carry. Watch your mouthwash as well - Equate (by Wal-Mart) are processed on a line shared by gluten-based products; cross contamination is definitely a serous problem. Be sure to call the Mfg and ask for a product specialist.

Good Luck and keep your head up

  • 2 weeks later...
Rocknroll Celiac Newbie
Rocknroll Celiac
Posted

Hey everyone, I'm Aaron. I am 25 and live in Glendale AZ. I am new to the Celiac Family. Today was difficult looking in my fridge and pantry and realizing I can't eat almost anything in either. Happy to have a place where I can connect with similar people.

Yo man, i found out i was celiac when i was 25 as well. It's pretty tough at the start, especially having to explain to people who are offering to have you over for dinner that you're allergic to basically everything. If you know how to cook, it starts becoming pretty cool to throw your own dinners and thanksgivings and things. What's really interesting is how much you'll find out that you have to cook ALL THE TIME. It's kind of time consuming, makes you wonder what life used to be like before fast foods!

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  • 5 weeks later...
dwillia75 Newbie
dwillia75
Posted

Hi and welcome! I was diagnosed when I was 50 after years and years of seeing specialists, having surgeries, and taking a LOT of medications. I never dreamed that the dreaded colonoscopy and endoscopy would have a benefit like this. I was in total shock (didn't know what gluten was) and had much to learn. Thanks to the Internet and some good books, I adjusted pretty easily. I almost immediately felt like a new and improved person once I quit eating gluten-foods. The health aspect outweighs my cravings for foods that I'll never eat again. Yes, I miss an occasional doughnut or biscuit, but Chebe, Open Original Shared Link and AllergyGrocer.com offer good gluten-free bread/pasta/homemade soup alternatives. I am going to take, after the holidays, a gluten-free cooking class at Viking Cooking School. I realize that I'm eating more fresh fruits and vegetables and not many gluten-free processed foods. They cost too much!

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    • cococo
      11 yo waiting for diagnosis

      By cococo · Posted

      Thanks @trents I'll keep that in mind.
    • trents
      11 yo waiting for diagnosis

      By trents · Posted

      One thing to be aware of is that reactions to gluten can sometimes be more severe after having been gluten free for a significant period of time. Something to think about in connection with a gluten challenge.
    • cococo
      11 yo waiting for diagnosis

      By cococo · Posted

      Hi @trents Thanks for your reply and the clarification on terminology—most appreciated. My GP has referred us to a Paediatric Gastroenterologist, and we're waiting for an appointment. She mentioned they might want to do an endoscopy or run further testing. But that often with children they try to avoid scoping them.  She also said it could take months to get an appointment, which is why she recommended starting a gluten-free diet immediately to see if there's any improvement in his symptoms, growth, and blood tests. I have an appointment in 5 weeks with the Paediatrician (who ordered all the tests)—not the Gastroenterologist. I expect the Paediatrician will also recommend a Gastroenterologist referral for further testing and diagnosis. I understand the reasons for confirming with biopsies. I'm just eager to help him feel better and I don't want to keep him eating gluten for months while waiting for a specialist when it's clearly affecting him. I really appreciate your input on this, especially your thoughts about this pointing to celiac rather than NCGS. Intuitively, it feels that way—he's always been incredibly healthy and strong, but he's suddenly wasting away. We're in Australia, so I'm not sure about benefits, etc. and needing a formal diagnosis. I’ll have to investigate.  If necessary to do a gluten challenge down the track for confirmation I'm happy to cross that bridge when I come to it. Thanks so much for your advice!
    • trents
      11 yo waiting for diagnosis

      By trents · Posted

      Welcome to the forum, @cococo!  So. let me first clarify some terminology. Gluten intolerance is a general term that can refer either to celiac disease or NCGS (Non Celiac Gluten Sensitivity or "gluten sensitivity" for short). Having said that, in common, informal usage there is still a lot of mix up in the use of the terms "gluten sensitivity" and "gluten intolerance".  Elevated DGP-IGG can certainly indicate celiac disease but the IGG tests are considered not quite as specific for celiac disease as are the IGA tests, especially the TTG-IGA. If it were the TTG-IGA that gave a 250 score it would have been grounds for declaring an official diagnosis of celiac disease without further testing in the UK and many European countries. With children, however, because their immune systems are immature, we often see their celiac disease show up in the IGG tests rather than the IGA tests. Has their been any talk about an endoscopy with biopsy of the small bowel lining to confirm or disprove a diagnosis of celiac disease? The endoscopy/biopsy is considered the gold standard of celiac disease diagnosis. Physicians are not eager to do scoping on pediatric patients, however, and try to avoid that unless there is a very good reason for it.  I think to proceed with a gluten free diet experiment at this time is a reasonable approach. If there is improvement in labs, symptoms and growth then it is reasonable to assume that there is celiac disease to blame or at least NCGS. At the end of the day, both conditions require a gluten free diet anyway. But I would also have to say that when looking at the total body of evidence you present, it looks much more like celiac disease than NCGS.  One caution, however, and that is if you are in the UK there are certain government provided benefits that incur from a formal diagnosis of celiac disease. I mention that because some of your spelling suggests that to me.
    • cococo
      11 yo waiting for diagnosis

      By cococo · Posted

      Hi all, I'd love some feedback on my 11 year old son who is waiting for a diagnosis. He has been unwell for about 6 months. His symptoms include: early morning (4/5am) nausea and vomiting, loose bowels, fatigue, headaches, aching legs, persistent dermatitis on cheeks. Recently, I noticed he wasn't growing as expected. After measuring him, we found his height had dropped from above 50th percentile to 25th, and weight from 50th percentile to 5th. I took him to our GP who confirmed he only grew 2cm in the past year and lost weight, and subsequently referred us to a paediatrician. We saw the paediatrician who ordered extremely comprehensive tests (including urine and poo testing, x-ray on wrist, hormones, thyroid, liver, kidney, diabetes checks, etc). While waiting for all results, our GP received some preliminary findings indicating coeliac disease. The GP recommended starting a gluten-free diet and referred us to a paediatric gastroenterologist. Most test results are normal except: Iron levels:  18 (normal range 20-200) Anisocytosis and Microcytosis (abnormal sized red blood cells indicating iron deficiency anaemia) Coeliac-related results: DGP IgG:     >250 (normal <15) DGP IgA:      8 (normal <15) Tissue IgA:   1 (normal <15) Tissue IgG:   1 (normal <15) Genetic markers are present for coeliac A comment was made on the blood tests that total serum IgA would be tested and commented on if below 0.07. There was no comment so I assume it wasn’t that low. While I understand it could be coeliac disease, gluten intolerance, or wheat allergy, his significant growth issues suggest coeliac. The paediatrician won't see me for 5 more weeks (because he's waiting for one more test he did on his chromosomes), but I'm concerned about waiting that long given his symptoms. Clearly he shouldn't be eating gluten regardless of the diagnosis, and I'm keen to help him feel better and start growing again, especially with puberty approaching. The blood tests were extremely comprehensive and ruled out everything except coeliac disease or a strong gluten intolerance. My GP is adamant it must be coeliac because of his symptoms. My GP said, "Don't worry about the chromosome test—that's just precautionary. His blood tests, weight loss, lack of growth, iron deficiency, fatigue, dermatitis, and other symptoms all point to coeliac." Would starting a gluten-free diet now and doing a gluten challenge later be unreasonable? (I do understand the reason to wait for a clear diagnosis, I just want him to feel better. Also, he is homeschooled so I can very much be in control of his food to ensure no cross contamination, etc) Also, does anyone have experience with highly elevated DGP IgG (but normal other results) and testing positive for coeliac? For what its worth, I personally have had many checks for Coeliac over the years and the results are always "unclear". Apparently I'm a complicated case, so I just eat gluten-free. Thanks!
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