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Always Confused


christicrete

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christicrete Rookie

I am very confused. I was diagnosed with ulcerative proctitis about 8 years ago at the ripe old age of 22. A couple of years ago I went on the atkins diet and completely emlimated all grains from my diet. For the first time since diagnosis all my symptoms went away. I learned of celiacs disease and asked for a test from my doctor. The results were negative. So I started eating wheat again and then asked for a test and still negative. Now since I have been eating wheat and products I feel completely miserable, bloated, naseated and now my proctitis is back. Naturally I elimated wheat again and now seems as if I have a problems with most starches and sugars. I am completely confused and discouraged about ever eating anything pleasant again. I also have tons of heartburn all the time. If anyone out there could shed some light on anything I have mentioned It would be great. Doctors have not been much help, and I feel very uncomforatble around my gastro guy's bed side manner and dont have a choice to change docs. I am new to the forums but have been at this site numerous times for info.

Thanks

Christi


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Guest BellyTimber

Welcome, like me not long ago I hope you'll find it a breakthrough discussing your questions here.

Re. heartburn, antacids (in point of info.) are the wrong thing for it because you need more and better stomach acid not less (there may be several other matters too).

Search the forum for suggestions on things like digestive enzymes, betaine hydrochloride with pepsin, etc. (take as you begin to eat?)

Take it one small step at a time, sit back & sigh with relief there are many many people here that will try & help...

:)

Michael

KaitiUSA Enthusiast

What tests did they test you for with celiac? Did they have your EMA and tTG done? Those are pretty specific for celiac. If you keep testing negative maybe you are gluten intolerant but not celiac. You could have an Enterolab done and they can check for celiac with that without requiring you to get back on gluten if you really think you have celiac. You may also want to consider York testing. They test for allergies and intolerances.

Also I would recommend you to get a good probiotic and some good enzymes(you always take the enzymes after you have at least 1 bite of food) Good luck :D

ianm Apprentice

The Atkins diet is what led me to discover my gluten intolerance. You will find that there are plenty of good things to eat when you go gluten-free. It is not nearly as limiting or as restrictive as it seems at first. I was so sick for so long that I gladly gave up the foods that were poison to me and I don't miss them. Keep at it because it is worth it. Doctors were of absolutley no help to me. All they wanted to do was write prescriptions not find a solution to the problem. This website is easily the best resource for gluten intolerance.

Ianm

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    • trents
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
      Are Bobresmill gluten free oats ok for sensitive celiacs?
    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
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