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What Would You Do?
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2 posts in this topic

Hello,

I've been suspected celiac since I was a baby and went gluten free and healed from vomitting and exczema. I had horrible pain and nausea episodes for 2 years when I was a teenager - it was suspected celiac but one GI ruled it out due to my height. <_<

A year ago, I had a stressful period and developed a migraine that lasted for 9 months. I had steatorrhea, cankers,psorasis, low iron and b12, lost weight, nausea, cramping and pain episodes in my right lower rib. I tried several doctors and naturopaths until I went for colonics and felt relief. The naturopath doing the colonics commented I wasn't digesting breads or dairy very well so I dropped both. In combo with the colonics, I felt great. I went to the Dr and asked about celiac again and we did the IgA test (and lactose intolerance) and both were positive (elevated levels) despite being virtually gluten-free (I didn't know everything not to eat at that point). The Dr told me if I was feeling better gluten free in combo with the blood test then I should just continue going gluten free. He sched'd an appt with the GI(this was in March) but due to wait, I only had the appt today. I have been completely gluten free since March. For a few months I still had cramping, constipation, cancers, acid reflux and was passing some bloody stools and some 'black flecks' but that has pretty much ended. I've been feeling tired and switched Dr's and my new Dr has found my b12 is back to normal (I was getting weekly shots) but that my iron is even lower and my thyroid is irregular.

Other than being incredibly fatigued (which I assume is thyroid and low iron-related), I feel great. For the first time in my life I'm going to the washroom almost once a day!! (it was once every 2 weeks for awhile, at best once a week and often it was diarrhea when I could go) and my cramping is 80% gone as is my bloating. B)

I went to the GI specialist today and gave him the run-down. I told him I'm 99% sure it's celiac due to the changes I've experienced but he insists I need the IgG (the other celiac blood tests??)test at a minimum and more than likely the endoscopy as well. This means I have to ingest gluten again. It saddens me as I had a dinner a few weeks ago with a minute trace of flour and was sick for 2 days after. I asked how long I'd have to ingest for it to show up. He looked it up but couldn't find anything. He figured 2 weeks but I'm leary from what I've read on the internet and don't want to make myself sick for a period of time only to get neg results b/c it hasn't been enough time!

My 'gut' says 'don't do it! you know how you feel' but the Dr today said I need the medical diagnosis official so they know to keep their eye on other celiac-related issues.

any thoughts?? any ideas on how long I'd have to ingest to be sure the tests would be true?? :blink:

thanks gang!

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Doctors' opinions differ....2-3 months might be what the average doctor would say.....try 2 meals a day if you're going to do it.

Hmmm.....I think how long you've been on the diet is a big part of it....gluten-free since March.....that's four months, then.......hmmm........I've been gluten-free five months and going back now would not be something I'd want to do. I, personally, don't think I'd do it. From what I've heard (with similar instances), Enterolabs might be a good idea.......never tried Enterolabs but almost everyone praises their testing. Talk to your doctor about it.................you don't need to eat gluten for it to work.

-celiac3270

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    • I just now saw the second reply and I see what you mean. Again, the issue is that I may have to go with the gluten until close to the end of the year.

      However, an idea did just come to mind, and that is, can my primary care doctor do such a test? I had normal blood work done, but they didn't really say anything about testing for celiacs. I can get an appointment with my primary care doctor much sooner than a GI.

      When I was talking to my PCP last, I asked her what I should expect as far as testing goes or what she may have been concerned about. Her reply was about a HIDA scan for the gallbladder but also any test needed in case of IBS or Celiacs. Just the way she threw that in there like an after thought and left me hanging kinda had me worried.
    • I am not a doctor that's for sure.  So, I can't even answer your questions.  If you know you have pre-diabetes, you probably are working with a doctor.  Can you email them and ask for a celiac blood panel?   You can work on the weight loss and diabetes -- that you can handle yourself now and take action.  I have diabetes and my glucose readings are fairly normal now without medication and I'm thin.  Being overweight does not cause diabetes.  It's either autoimmune (type 1) or you become insulin resistant (type 2).  You can cut out all sugar and  processed stuff ASAP to help take action and start walking 10,000 steps (helps with the insulin resistance).    But the prediabetes is not going to kill you in the next year.  Whatever's in your gut is more likely going to get you much sooner.  But heck, I'm not a doctor and I don't even know you!    
    • Hi Steph, Yes, celiac disease can cause a myriad of symptoms and damage to the body,  Have you completed all celiac disease testing?  Usually they do the blood antibodies test first and then do an endoscopy.   You shouldn't go gluten-free until all testing is completed. Gluten is in many processed foods.  But if you stick with whole foods it is not hard to avoid gluten.  Getting used to eating gluten-free may take some time, as we need to adjust our preferences in diet.  But there are many foods that are naturally gluten-free.  Gluten is the protein found in wheat, rye and barley.  Some celiac disease organizations recommend avoiding oats also for the first 18 months of the gluten-free diet. Celiac disease impairs the ability of the body to absorb nutrients (including vitamins).  That can make it hard for the body to maintain itself and heal/repair damage.  So celiac can easily impact any part of the body. Sardines, tuna, mackeral and salmon have good amounts of vitamin D in them.  There are supplements available also, but not all are good.  You can check them at the labdoor website.  Nature Made is a good one and not expensive.  Internal damage from celiac can cause liver issues.  Those will probably clear up after being on the gluten-free diet a while. Recovery from celiac can take  months, and can be a rocky road.  The more you stick with whole foods and avoid cross-contamination issues the sooner you will heal IMHO. You may find that dairy causes problems for your digestion at first.  But it make stop being a problem after you have healed up some. welcome to the forum!
    • Will this be dangerous considering how long I have to wait for any testing? I may not even get a blood test in November but here is hoping. I just worry having to wait so long will cause serious issues, not to mention delay of weight loss which I need for the pre-diabetes. Do ulcers have a chance to cause yellow stools though? I suppose a stool test will be needed for that for any signs of blood in stools but visually it does not seem so. The biggest issue is not knowing what else could be causing the yellow stools as this would not be a diabetic or ulcer thing. And without negative signs on the gallbladder or liver, it is narrowing down the list.

      At the very least this is making me assume I can wait on a final scan of gallbladder and attempt blood tests and endoscopy if they recommend it.
    • The first step is getting a celiac blood panel.   Any medical doctor can order one.  Live near Chicago?  They are do free screenings this month (check their website).  The cost is less than $400 for the complete panel.  If you get a positive on any one of them, then you should be referred to a GI for an endoscopy to obtain intestinal biopsies.   Here's more information from a reliable source and not just some lady on the internet: http://www.cureceliacdisease.org/screening/ Having had my gallbladder removed (probably ruined from undiagnosed celiac disease, but I don't know that for sure), I would recommend a HIDA scan.  I have no idea how expensive that one is.  It's a nuclear test that checks for functionality.  Basically, is your gallbladder squeezing bile into your small intestines when those fries or bacon come down the tube.  Mine happened to actually be rotting (infected).  ER suspected appendicitis, but it was a rotten gallbladder.  I never had any stones (that's what the CT or the ultrasound can find).  I am sorry that you are ill.  Keep eating gluten until all testing is complete.  This is important.  Go gluten free now?  Here's why you shouldn't..... http://theceliacmd.com/2013/04/six-reasons-to-test-for-celiac-disease-before-starting-a-gluten-free-diet/  
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