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shannonmc

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shannonmc Newbie

Hi Everyone! I new and over the next few weeks/months I'm going to have lots of questions--here's the story (familiar to many of you , I'm sure).

Family history of Crohn's, IBS, thyroid disease, reactive arthritis (Reiter's Syndrome), Premature Ovarian Failure, and Lupus.

I have hashimoto's and premature ovarian failure and my endcronologist asked 1.5 years ago about my bowels. When I told her about my mysterious and painful diarrhea with alternating constipation, she asked about a family history of wheat/gluten intolerance (yes). Then asked if I was irish (yes). She ordered ITG, TTG, and EMA blood work and viola, I was TTG and EMA positive.

Okay, so then I freaked out and refused the biopsy. My husband is italian and eating pasta and bread was/is really important to him plus I have three young children and I wasn't willing to change. (My husband is really nice and kept on encouraging me to get the biopsy and was convinced I was gluten intolerant LONG, LONG before I was.) So to make a long story short, and after having the biopsy canceled twice (once by me, once by the doctor) I decided to go gluten free. Familiar story--after only two weeks I felt FANTASTIC, and I mean absolutely fantastic.

My backaches are gone, my mysterious diarrhea is gone, no more pain, no more gas. I'm sleeping so wonderfully after 6 years of only 6-7 hours of sleep.

Okay, so I know I should have had the biopsy first, but now that I'm reading this forum there is this other test, right? Here's the clincher for me--my endocronologist called and said she was going to lower my meds--I don't need as much because I'm absorbing them so much better. Cool.

So here's my questions--cross contamination in my kitchen. The issues here are significant--does anyone live with non celiacs and have tips? (I don't have a toaster, so that is not an issue) What about washing and sponges--they eat pasta, I wash the dish, is the sponge now contaminated? I can't seem to get my mind around this--what good would it do to have a separate sponge if I'm washing dishes that had wheat in them? Can I still bake for the kids or would it be better to do it with a gas mask on? (Just kidding about the gas mask). I will have more questions later but thought I would start here.

Thanks in advance and I'm so glad this forum exists--you posts have been so helpful over the last few months.

-Shannon

P.S. I posted this a few minutes ago and realized that I probably posted in the wrong forum, my apologies, maybe just the question about entrolab (sp?) is approp and skip rest and I'll post the rest in the other forum. Thanks for your patience as I figure this out.


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Jodi Mills Apprentice

Hello,

I am new to the whole gluten free diet, but was diagnosed with celiac at around age 6. however i didnt stick to the diet. Now as I am retraining myself i have asked some of the same questions as you, and was told the best thing to do is to have new sponges, in your case it might be easier to label which one is for your "gluten free" dishes, that is what I have had to do in my household, my boyfriend is a gluten eater. I have my own special pot, and a special pan, that only I can use. i too do not use a toaster, although he does. spatulas, anything plasticky, should be replaced......

hope that helps!

this site is amazing, I feel great being able to pass on information that was passed on to me!

Guest Jemenii36

hi shannon-

I completley understand your fears and I am also concerned with cross contamination, as well. However, having been diagnosed with celiac disease almost a year ago i have been doing a lot of research. It really seems that although many people are not allergic to wheat/gluten, it has been show that is a an extremely healthy diet to follow. How about trying to make dishes gluten free without telling your family, and see what they say (if they notice). The more recipes i would like to try but can't, due to wheat/gluten in the recipe, the more i am able to find substitutions....and let me tell you, they mostly come out great! It takes a lot of trial and error but if you enjoy cooking and baking i guarentee no one will even know what you are making is gluten free! let me know if you need any suggestions or help with anything, as i am continuing to find recipes that i can alter!

-Samantha

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    • cristiana
      You are very welcome @Dizzyma. Gastroenterologists are now following this rule in the UK more and more with children, so I am not surprised your daughter is not having an endoscopy.   Switching to a gluten free diet should begin to help, but also, even if you have to have testing done privately, it would be very helpful for you to find out if your daughter has vitamin and mineral deficiencies, which is highly likely,    In the UK tests are generally offered on the NHS for B12 and ferritin, and sometimes vitamin D.  Shortages in these can really cause any anxiety or depression or ramp it up. If you do end up supplementing, make sure your GP is aware as levels do need to be monitored, for example,  too much ferritin can cause huge health issues. Re: anxiety, definitely speak to a GP or another health care professional about this if it is an issue. Hopefully the Coeliac Society of Ireland will also be able to help. Cristiana  
    • tiffanygosci
      EDIT: I did find a monthly Zoom meeting for Celiacs through the Celiac Disease Foundation, so I'll be able to talk with some other people on January 15. And I also found a Celiac Living podcast on Spotify made by a celiac. I feel a little bit better now and I am still hoping I will find some more personal connections in my area.
    • trents
      Welcome to the celiac.com community, @mamaof7! It means for the one celiac disease antibody test that was ordered, she tested negative. However, other tests should have been ordered, especially for someone so young who would have an immature immune system where there would be a high probability of being IGA deficient.  The one test that was ordered was an IGA-based antibody test. It is not the only IGA antibody test for celiac disease that can be run. The most common one ordered by physicians is the TTG-IGA. Whenever IGA antibody tests are ordered, a "total IGA" test should be included to check for IGA deficiency. In the case of IGA deficiency, all other IGA tests results will be inaccurate. There is another category of celiac disease antibody tests that can be used in the case of IGA deficiency. They are known as IGG tests. I will attach an article that gives an overview of celiac disease antibody tests. All this to say, I would not trust the results of the testing you have had done and I would not rule out your daughter having celiac disease. I would seek further testing at some point but it would require your daughter to have been eating normal amounts of gluten for weeks/months in order for the testing to be valid. It is also possible she does not have celiac disease (aka, "gluten intolerance") but that she has NCGS (Non Celiac Gluten Sensitivity, or just "gluten sensitivity" for short) which is more common. The difference is that celiac disease is an autoimmune disorder that damages the lining of the small bowel whereas NCGS does not autoimmune in nature and does not damage the lining of the small bowel, though the two conditions share many of the same symptoms. We have testing to diagnose celiac disease but there are no tests for NCGS. To arrive at a diagnosis of NCGS, celiac disease must first be ruled out. A gluten free diet is the solution to both maladies.   
    • mamaof7
      For reference, daughter is 18 mths old. Was having painful severe constipation with pale stool and blood also bloating (tight extended belly.) Liver and gallbladder are normal. Ultrasound was normal. Dr ordered celiac blood test. We took her off gluten after blood draw. She is sleeping better, no longer bloated and stools are still off color but not painful.    "GLIADIN (DEAMID) AB, IGA FLU Value  0.84 Reference Range: 0.00-4.99 No further celiac disease serology testing to be performed. INTERPRETIVE INFORMATION: Deamidated Gliadin Peptide (DGP) Ab, IgA A positive deamidated gliadin (DGP) IgA antibody result is associated with celiac disease but is not to be used as an initial screening test due to its low specificity and only occasional positivity in celiac disease patients who are negative for tissue transglutaminase (tTG) IgA antibody."   Anyone know what in the world this means. She isn't scheduled to see GI until late April. 
    • Dizzyma
      Hi Trent and Cristiana, thank you so much for taking the time out to reply to me.  My daughters GP requested bloods, they came back as showing a possibility of celiac disease, she advised me to continue feeding gluten as normal and wait on a hospital appointment. When we got that the doctor was quite annoyed that the gp hadn’t advised to go gluten free immediately as she explained that her numbers were so high that celiac disease was fairly evident. That doctor advised to switch to a gluten-free diet immediately which we did but she also got her bloods taken again that day as it made sense to double check considering she was maintaining a normal diet and they came back with a result of 128. The hospital doctor was so confident of celiac disease that she didn’t bother with any further testing. Cristiana, thank you for the information on the coeliac UK site however I am in the Rrpublic of Ireland so I’ll have to try to link in with supports there. I appreciate your replies I guess I’ll figure things as we go I just feel so bad for her, her skin is so sore around her mouth  and it looks bad at an age when looks are becoming important. Also her anxiety is affecting her sleep so I may have to look into some kind of therapy to help as I don’t think I am enough to help. thanks once again, it’s great to be able to reach out xx   
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