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gluten-free And Still Have Problems? This Might Help/


Sulevismom

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Sulevismom Apprentice

Hi everyone,

I've know about having celiac disease for almost a year now, and I'm one of those people for who a gluten free diet alone does not seem to work. I was constantly thinking I was getting 'gluttened' by my husband and my son's crumbs, or by some cosmetic that I had not checked. Frustrated, I dedicated a significant amount of time searching. What I found might help many others.

Like many other people with celiac disease, I came to the conclusion that I have a 'leaky gut'. When I was first diagnosed, reading those two words together was repulsive. I did not want to consider that in addition to the realization that I have a disease, I also have significant damage to my intestines.

For all of you out there who think they've tried everything, and are so frustrated because you get 'gluttened' every week or few days, PLEASE pick up the books the Specific Carbohydrate Diet and Gut and Psychology Syndrome. These books go into quite a bit of detail explaining why people with celiac disease and other digestive disorders have permeable intestines and how this is connected to many other ailments.

The diet that these books (and websites-just google them) recommend is to have no grains and no starches (potatoes, yams, etc.), and most importantly, NO SUGAR. After the introductory protocol to this diet is followed, it is basically the same as a paleo/primal diet, which makes sense, because these diets are fashioned after what humans are known to have evolved eating before agriculture only 10,00 years ago. It makes sense that many of us have not evolved to incorporate high carb foods well, especially the overly processed versions of the last 50 years.

I am doing so much better now that I'm following the diet. I can't even begin to describe. I can even brush off the croissant crumbs from my son's shirt with my bare hand without freaking out that I'll get contaminated!

I hope this helps some people. SCD/GAPS, Etc., is a pretty strict diet, but there is tons of online support.


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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
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