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rfitzgibby

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rfitzgibby Newbie
rfitzgibby
Posted

Hi All:)

I just joined this forum, and you are the group of people who have the knowledge and first hand experience I need to tap into. MY STORY: I landed in the hospital several years ago with what they diagnosed as gastritis. After being so sick, I vowed to eat healthy and focused on fruits and vegetables. This led me to the realization that I got sick whenever I ate anything that had gluten in it. I was in denial for years, but by eliminating and then reintroducing gluten, I have stumbled upon the fact that I can't have the foods I used to love so much.

I stick to a gluten free diet, not knowing if I am gluten intolerant or celiac. My DNA test indicates I have a "slightly "increased risk for developing celiac,  Question: Is there a way to determine if I actually have celiac disease (since I have been gluten free for years)? I am having a bad episode as I write this- seems to happen whenever I eat out (even if they say it is gluten free). I owe it to my daughters to find out for sure.

Thanks for reading...I appreciate it!

Renee

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GFinDC Veteran
GFinDC
Posted

Hi,

There are 2 main forms of celiac testing.  The blood tests check for antibodies in the bloodstream.  The endoscopy checks for damage in the small intestine that is typical of celiac disease.  Both of these tests require the person to have been eating gluten long enough for either the antibodies to show up in the bloodstream or damage to show up in the gut.  For the endoscopy that is usually 2 to 4 weeks but for the blood antibodies it is 12 weeks.  This period of eating gluten daily to prepare for testing is called a gluten challenge.

The gene test is the only one that doesn't require you to be eating gluten at all.  But the gene test doesn't confirm you have celiac, only that you could develop celiac.

We always encourage people to get tested before going gluten-free.  That is because it is faster than doing a gluten challenge, and also doing a gluten challenge can be very unpleasant after being gluten-free.

Your daughters should be tested via blood antibodies every few years or sooner if they develop symptoms.

One other test you could consider is a measurement of your vitamin and mineral levels.  Your daughters could be tested for that also.  Since celiac disease can cause malabsorption it is somewhat common for sufferers to have vitamin and/or mineral deficiencies.  Vitamin D and the B vitamins are some of the frequent problems. 

Awol cast iron stomach Experienced
Awol cast iron stomach
Posted

I had to do the challenge since I had gone gluten free before. Long story and 20 plus years misdiagnosed.

At this time I don't think researchers have come up with a method other than the challenge .

Even though I was gluten-free before the challenge I lived in a gluten home and kept food separate etc. In the end my DH and ataxia especially in addition to my other symptoms require us to be a completely gluten-free household. I realize now I was doing gluten-free wrong . I also didn't know for sure so I never joined this forum .  I didn't officially join the forums here where I learned the proper and safe way to live life with this illness until I was seen by a team willing to test me for Celiac.

A challenge was not easy. As gluten-free in DC says I was diagnosed vitamin D deficient 8 years before my diagnosis. celiac /DH was not what my Drs over the years thought of . My general labs testing didn't show any autoimmune issues.  My symptoms were addressed separately and I am not even certain they looked at past records to connect the dots.

Our home is completely gluten-free, I do not eat out.  I was told by one Dr, I can not even eat in the lunchroom at work as gluten is too prevalent. The volume of people who eat in there for 3 lunch shifts generates a lot of cc potential.  I got cc 3 times in 5 months of starting the job.  ( even with my vigilance - I kept my lunch separate place used a placemat etc. ) 

So there is much to learn about the gluten-free life that as of now you may not realize. You may not even know the infinite details that we address in daily life.

Welcome and Good luck on your journey 

 

Edit infinite ? autocorrect inncorrect

Debra smallwood Newbie
Debra smallwood
Posted

I found out through the aip diet and knowing I have several vitamin deficiencies that I have celiac disease I am scared to be tested because I get such a bad reaction if I eat something even with traces of gluten in it I also can't tolerate dairy .. are tall saying that by having bread in the house I can be getting exposed. My neropathy is not going away and I have still have brain fog and fatigue sometimes I know it's off topic I just don't know where to go to ask please and thank u 

GFinDC Veteran
GFinDC
Posted

Hi Debra,

You could be exposed if the other people in your house are careless, or if you are careless yourself.  Things like sharing the same butter or peanut butter or mayo can be a problem.  I live with gluten eaters myself and have to be careful about things like that.  I have a small dorm refrig I keep some food in so I don't have to worry about it.  Things as simple as having separate silverware in a jar or something and rinsing your plates and dishes before using them help.  Also I have my own toaster so that's not a cc problem.

Nerve issues are not something that heal quickly though.  So it's good to be careful and make sure you get enough B vitamins.

helen redden Newbie
helen redden
Posted

can i use the same silverware and can my dishes be washed with other persons dishes and dishcloth

cyclinglady Grand Master
cyclinglady
Posted
17 hours ago, helen redden said:

can i use the same silverware and can my dishes be washed with other persons dishes and dishcloth

You can if washed in a dishwasher.  However, if you are hand washing, then I would advise washing items separately and use a different dishcloth or sponge.   

Here is more information about cross contamination for avoiding gluten: 

https://www.beyondceliac.org/gluten-free-diet/cross-contact/

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    • cristiana
      My Adult daughter is blaming me for her "possible" Celiac disease.

      By cristiana · Posted

      Hi Marie Welcome to the forum. I am so sorry your daughter is pointing the finger at you like this.   I am afraid children of any age can be very cruel to their parents - I certainly look back at some of the things I said to my mother and father in the past, and wish I could unsay them.  Sometimes people just need a safe place to vent, and unfortunately having a go at one's parents is the all too easy option.  If she is anything like me, she will regret what she says one day.  (Oh... if only I had the chance rewind the clock!) I just wanted to add one more thing to Trent's and Scott's excellent posts and that is regarding diet:  I have to say, not one person  (my nutritionist, my gastroenterologist or GP) has EVER suggested that a poor diet was the cause of my coeliac disease.    In all the various clinics I have attended these past nearly 12 years no-one has ever asked if I was brought up on processed food, or questioned if I eat 5 fruit and veg a day.  Sure, unfortunately I am only too well aware that I could do a lot better with my diet and it's a constant challenge for me not to give into what I like (unfortunately I've always had a sweet tooth).   But I know some super healthy 10 fruit and veg a day types who still got coeliac disease, and equally, a lot of people who eat all the wrong stuff and they still have cast iron stomachs. Do encourage her to get checked though - it may be that she hasn't got coeliac disease at all. Come back to us if you need any more support through the process. Cristiana
    • trents
      My Adult daughter is blaming me for her "possible" Celiac disease.

      By trents · Posted

      Welcome to the forum, @Marie70! The first thing to know is that celiac disease has a genetic base. The two main genes that have been identified as providing the potential to develop celiac disease are HLA-DQ2 and HLA-DQ8. About 40% of  the general population carries one or both of these genes. However, only about 1% of the general population ever develops celiac disease. So, we know that in addition to possessing the genetic potential to develop celiac disease, there has to be some triggering environmental or medical "stress" factor (or factors) that switches the gene or genes on such that they are awakened from their latent condition and become active. What may be the triggering factor (or factors) is the subject of much debate. Here is an article that discusses this subject: Second, what will your daughter have to say if her testing for celiac disease is negative? She may have to add crow to her diet. Third, and this is what I really want to focus on because my wife and I are dealing with something similar in our relationship with our own adult daughter: the real problem is not whatever shortcomings you, as the family cook, may have had when providing meals, the real problem is with your daughter's heart/soul/attitude. If it turns out to be true that she has celiac disease, it is likely she would have developed the condition sooner or later even if her diet had been healthier while growing up. She is angry about the prospect of having to deal with the dietary and social limitations that having celiac disease would impose upon her. She doesn't want to face up to the fact that this may be a new reality that will dramatically changer her life and she is looking for someone or something to blame. And she has conveniently turned her wrath on you rather than saying to herself, "Okay, this is what it is. Now what can I do to make adjustments in order to with it the best way I can?"  When faced with a life-changing reality, people will either accept it for what it is, make adjustments and move on or they will become angry and look for something or someone to blame and get stuck. For now, at least, your daughter has chosen the latter option. Don't let her problem destroy both of you.
    • Scott Adams
      My Adult daughter is blaming me for her "possible" Celiac disease.

      By Scott Adams · Posted

      It sounds like you’re carrying a lot of guilt, but please know that you didn’t cause your daughter’s potential celiac disease or your son’s Crohn’s. These conditions have strong genetic components, and while diet can influence symptoms, it does not cause autoimmune diseases. You did the best you could with the knowledge you had at the time, and no parent is perfect. Your daughter’s frustration is understandable, but it’s likely coming from a place of fear and uncertainty rather than true blame. Let her get tested, and if she does have celiac disease, you can support her moving forward. Instead of focusing on guilt, try shifting the conversation toward healing and learning together. You’re not alone, and you don’t deserve to carry this weight on your own. This article might be helpful. She needs to be screened for celiac disease before she can be sure that she has it. Another approach not discussed in the article is a genetic test for celiac disease, which she could do without eating gluten.      
    • Marie70
      My Adult daughter is blaming me for her "possible" Celiac disease.

      By Marie70 · Posted

      Hello, My mid twenties daughter is blaming my husband and I for her celiac disease.  She has not been diagnosed at all, but GOOGLE has informed her she has it.  She is going to go get tested now, but my question is, did we?  I was not the best cook while she was growing up and often made quick processed food for meals.  She is blaming us for what she ate growing up and is angry that we didn't feed her better.  I don't know how to react and all I could tell her was I was sorry.  Her older brother has Crohn's disease and he was diagnosed as a teenager.  She is also furious with us that we didn't change his diet either.  I don't know why I didn't and I am having so much guilt I don't even know how to handle this situation.  Both sides of our family have a history of IBS, Celiac and Crohn's disease.   I guess I just wanted to hear from anyone out there that can either point blame at me (I can accept it) or tell me that the food she ate growing up didn't have an affect on her.  I am thinking it most likely did. Thank you, Marie
    • RMJ
      High blood test numbers - with scales. Any advice?

      By RMJ · Posted

      I’d say celiac is likely.  Please continue to eat plenty of gluten until your endoscopy to be sure that any gluten-related damage can be seen.  Plus it gives you one last chance to enjoy your favorite gluten-containing foods. I hope the endoscopy/biopsies give you a definitive answer. 
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