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Layman's Terms, Please!

tigger-babies1

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tigger-babies1 Newbie
tigger-babies1
Posted

I am admittedly very new to the celiac arena. My sister's crew is all gluten sensitive along with 20 or 30 food allergies thrown in for good measure! :blink:

The problem I have is living in a medical college town, I have seen the head of the G.I. dept. and he is ten years behind on testing methods. He said he doesn't collect fecals because "they take so long and his office really doesn't like working on them." Instead, he wants a sigmoidoscopy, and a flex sig, along with a myriad of blood work.

The dilemma comes along in the factor that my husband is a fireman/EMT and he thinks we should just do what the Dr. wants. I say it's MY body and I am unsure how comfortable I am with a guy going that far up and down and not buying me dinner afterwards! :D

Any thoughts are greatly appreciated.

SB

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Lisa Mentor
Lisa
Posted

SB:

I am glad that you have found this site to seek information. But in order be of help to you, your have so give us some more information. Informations such as: what are your symptoms, how long, why do you think that this is celiac, and what information do you need. There are specific testing that can be done for Celiac.

What is your diet now and do you have the intent on changing your diet. If you do prefer to be tested. You must retain a full gluten diet for a period of time for the results to the accurate.

We are not doctors here, but many people with a vast amount of knowledge. We can be helpful.

If you would like some help, please give us some more detailed backround as to your questions.

Lisa

Rachel--24 Collaborator
Rachel--24
Posted

Are you trying to get tested for Celiac? First no GI will test fecals for Celiac...thats not how they diagnose....they do bloodwork or biopsy. Isnt a sigmoidoscopy something like a colonoscopy but less complete? Thats not how they test for Celiac either. You would need bloodwork done and there are specific tests that should be ordered as far as that goes. Usually bloodwork is ordered first and if Celiac is suspected an Endoscopy is the next step. When they do the Endoscopy they will take several samples and biopsy them. If you're bloodwork is positive you really dont need this test but lots of doctors wont diagnose unless they see a positive biospy. The biopsies often give false negatives. Sometimes bloodwork is positive but biosy is negative even though the person is truelly Celiac.

Judging from your post it doesnt sound like this doctor knows what he's doing at all...I would look for a more informed doctor. Sigmoidoscopy or colonoscopy will not identify Celiac. You need an Endoscopy.

tigger-babies1 Newbie
tigger-babies1
Posted
  • Author

Sorry about not including a name, my family and I have a habit of signing our initials to everything.

My name is Sarah. My family has the gluten gene and possibly the celiac one as well. We just don't know if mine is activated. I have experienced a large variety of problems that seem to stem from allergies, but what allerigies no one has realy been able to pinpoint.

We know the gene is in the family because my sister's children all were having extreme food allergies and she payed out of pocket to get them all tested along with herself. That's when they found the genes.

I have had severe reactions including anaphalactic shock and multiple hospital visits. I was diagnosed with cutaneous mastocytosis in October last year, and one month after they put me on extreme antihystamine meds, I started having chronic diarrhea. Each time after I eat, I have stomach cramps and within about 30 min to an hour, I am running for a bathroom. Quite frankly, my bottom is very sore! :o

I was originally set to get a bone marrow biopsy to see if I had Systemic Mastocytosis, but my symptoms calmed down and they said it could wait.

I am quite frankly confused about it all. Add to the mixture my husband and I have been experienceing some marital rough times, and you have quite a cocktail!

The Fecal test shows malabsorption, I think. The sigmoidoscopy is a half of a colonoscopy. The flex sig is supposed to go down the throat to the upper intestines and grab a sample.

As for changing the diet, I have done all sorts of things to help out my nieces and nephew, so I am aware of what it entails. The time length of my problems in general is about 10 years now, with many things seeming to progress to a more severe symptom.

Hope this helps describe things a little better.

Sarah

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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

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    • RMJ
      High blood test numbers - with scales. Any advice?

      By RMJ · Posted

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