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Should I Bother With Further Testing?
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2 posts in this topic

Hi everyone,

Last May I underwent the Celiac Blood panel test, with negative results on all tests (more than 3, either 5 or 6 were done). The internist at the time said regardless of the results, if I feel better by not eating gluten, then don't eat gluten. Ok, then I went out of town for a month and discovered all kinds of sources of hidden gluten in restaurants. It was horrible and I felt sick a lot.

When I came back home, I noticed that even without gluten I had symptoms. Since then ive cut soy, corn, and chocolate (dairy was already gone). So no gluten, no soy, no corn, no dairy, no chocolate....but I may need to add coconut milk as welll...have to test that. My symptoms are digestive. At their worst, the intestinal cramps wake me at night and keep me miserable all day, along with the fatigue, depression, slight nausea, and at times my temperature has fluctuated wildly. From corn, migraine, all the others it's diarrhea.

Recently I saw a gastroenterologist. The blood and stool tests (taken while healthy and controlling diet) reveal no pathogens, no blood, no inflammation, good organ function, no malabsorption, slightly high iron (not high enough to cause damage, just interesting).

Today I saw an allergist. He would like to do scratch tests for food, dyes and preservatives. But in my opinion I have intolerance reactions, not allergic reactions. The allergist told me that an endoscope is required to test for intolerances. And I would need to go back on gluten for proper results. Which means I would have to knowingly eat this poison that knocks me flat, makes me sick and tired, and basically worthless for 3 days...and do this for 6-12 WEEKS? Seriously? I really can't care for my 4 year old twins and be sick all the time. I could just go along with my diet restrictions, eat healthy, and feel healthy.

What would you do?

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Really, if it were me, I would just quit the gluten (and whatever else is bothering you at the moment) and be healthy. Which is actually what I did because I had never even really heard of celiac at that time. It is good that you are showing no signs of malabsorption. Did he do a full vitamin and mineral panel on you, like Vitamins D, B12, A, E, K, and check for magnesium, potassium, zinc? Gluten can cause deficiencies in all of these. And if you have low D you are at risk for osteopenia or osteoporosis.. It is wise to get all these checked out. If he ran 5 or 6 celiac tests he did run the full celiac panel. It is also recommended that you have your thyroid function tested.

Yes, to test for celiac disease (there is at the moment no test for gluten intolerance) you do have to go back on gluten for a longer period of time than most intolerants can make it through :unsure: And, as you say, knowingly continue to poison yourself for that time whilst suffering all the time. And you have twins to take care of, you say? Yes, I know what I would do. Others on here have different points of view and hopefully will offer them to you.

One thing you have to be aware of is that celiac is a genetic disease and it is possible to pass it on to your children, so it would be wise to have the blood tests for them and repeat every 3-4 years, and also watch them for symptoms.

Best wishes in your decision making. :)

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    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
    • Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful. 
    • Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV.  obviously that's way worse than celiac. Just some food for thought.
    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
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