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Had My Endoscopy - Do I Try Going Gluten Free?


MyHandful

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MyHandful Newbie

I just had an endoscopy done last Monday and I will have the results early next week. The GI doctor said everything looked normal and he is fully expecting the biopsy to come back negative (I only tested positive on a IGA anti gliadin test and have more constipation than diarrhea issues). He did tell me I could try going gluten free for 3 to 4 weeks to see if I feel better and if I don't than I know it's probably not the gluten.

Do you think it's worth it to try going gluten free? I have 5 kids so it would be a lot of work to go gluten free and change all our meals even for a month. I make 100% whole wheat bread all the time from grinding my own flour. So it would be a huge adjustment, but on the other hand I feel horrible right now. I have nerve, muscle, and joint pain and horrible fatigue. I have stomach cramps all the time.

Could my symptoms be caused by just a gluten intolerance and not celiac disease? I think it would be easier to give the gluten free diet a try if I thought it was at least a possibility.

Thanks!


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leadmeastray88 Contributor
I just had an endoscopy done last Monday and I will have the results early next week. The GI doctor said everything looked normal and he is fully expecting the biopsy to come back negative (I only tested positive on a IGA anti gliadin test and have more constipation than diarrhea issues). He did tell me I could try going gluten free for 3 to 4 weeks to see if I feel better and if I don't than I know it's probably not the gluten.

Do you think it's worth it to try going gluten free? I have 5 kids so it would be a lot of work to go gluten free and change all our meals even for a month. I make 100% whole wheat bread all the time from grinding my own flour. So it would be a huge adjustment, but on the other hand I feel horrible right now. I have nerve, muscle, and joint pain and horrible fatigue. I have stomach cramps all the time.

Could my symptoms be caused by just a gluten intolerance and not celiac disease? I think it would be easier to give the gluten free diet a try if I thought it was at least a possibility.

Thanks!

You had positive bloodwork - which is rarely false (when positive)

So whether your biopsy comes back negative or positive you should definitely go gluten free for atleast a month and see if your symptoms resolve.

I had the exact same symptoms as you - and all resolved on the diet.. :)

happygirl Collaborator

If you think trying the diet is worth the inconvenience of a few weeks, then yes, try it. What will hurt to try it? If its not the answer - then you keep pursuing other routes and go back to eating gluten. If it is the solution - then you have an answer!

Sometimes its better to know than to not know.

ravenwoodglass Mentor

There are false negatives even with the biopsy for many different reasons. Yes you need to get on the diet and give it at least a couple of months. If you were positive on blood tests chances are extremely good that you need the diet. It is not as hard as doctors seem to think it is and you have come to a great place for info on it. The change in the way you feel will make the inconvience well worth it. Don't let celiac take away your children's childhood. They need a healthy parent who is able to go for walks, play with them at the playground, go to movies and sporting events, go to school functions and just to be painfree. Celiac didn't just effect me, it also strongly effected my children and my ability to be a good Mom. It also lead to my kids living with the constant fear that their mother was dieing. That fear got so bad that my DD at age 14 told me that the family would understand if I committed suicide. No child should have to grow up like that. In additon if the diet helps you make sure that you get your children tested at the first sign of issues they may have. Mine also showed positive on testing but the doctors only tested after I was diagnosed. Before that we were told that my kids issues were from everything from not wanting to go to school to being depressed to the typical IBS diagnosis. After their diagnosis they became kids who almost never missed school and grades went from average to excellent earning them both scholarships. The DD I mentioned has done so well that she completed 2 bachlors degrees, one a five year degree she completed in 3 years and the second in nursing less than 2 years after the first. It is hard to adjust at first to the diet, especially since we are so sick but it does get easier in time.

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    • Samanthaeileen1
      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
    • Wheatwacked
      My son was diagnosed when he was weaned in 1976 after several endoscopies.  Given your two year old's symptoms and your family history and your pediatrition advocating for the dx, I would agree.  Whether an endoscopy is positive or negative is irrelevant.   That may happen even with endoscopy.  Pick your doctors with that in mind. In the end you save the potential trauma of the endoscopy for your baby.   Mine also had really nasty poop.  His doctor started him on Nutramigen Infant because at the time it was the only product that was hypo allergenic and had complete nutrition. The improvement was immediate.
    • RMJ
      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
    • Samanthaeileen1
      here are the lab ranges.  Normal ranges for tissue transglutaminase are: <15.0 Antibody not detected > or = 15.0 Antibody detected normal for endomysial antibody is < 1.5. So she is barely positive but still positive. 
    • JoJo0611
      I have been diagnosed with coeliacs disease today after endoscopy, bloods and CT scan. I have also been diagnosed with Mesenteric Panniculitis today. Both of which I believe are autoimmune diseases. I have been told I will need a dexa scan and a repeat CT scan in 6 months. I had not even heard of Mesenteric Panniculitis till today. I don’t know much about it? Has anyone else got both of these. 
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