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New to this....Lectin Intolerance? CD?

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Celiac Disease
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daisybrown
Regular Member
Joined : Dec 2010
Posts : 51
Posted 9/15/2011 10:05 AM (GMT -7)
Hi, I'm new here. I have posted before, but not a regular. I think I am gluten intolerant. I have had a blood test that came back negative for CD. However, whatever the test says I recognize I have a problem with Gluten/Dairy. I eliminated both from my diet for several weeks and notice an improvement....the gas/bloating, cramping, and my stools improved to just about normal.

In the last few days I slipped and ate foods from both groups.....big mistake. My "IBS" has returned? I was dx with IBS in Jan this year ....that's when they did the CD blood test....I also have reactions to other foods, like corn, rice, soy, nuts, beans (various kinds) etc....some just dont digest or give me diarrhea/soft stools/cramps....the GI doc said I could simply be intolerant to carbs....??? possible I guess? what does this mean?

Anyway, I have been reading up on Lectin intolerance and it seems I react to many of the foods listed in the literature. I would like to know if anyone else here has tried supplements that block lectin, or if the elimination diet has worked for them. Ugh, it just seems like I won't have ANYTHING to eat... D:

Thanks,
db
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bethlany889
Regular Member
Joined : Sep 2011
Posts : 41
Posted 9/17/2011 10:58 AM (GMT -7)
Daisy, I tested negative twice, however was completely disabled by Gluten. My daughter tested very positive and my son borderline so we all went gluten free and my symptoms of 17 years just began to melt away. Celiac or gluten intolerant? I care not lol, the stuff simply just makes me devastatingly sick!

I use to have a major problem with carbs too. I would always say before diagnosis, wheat makes me feel the worse, then major carbs like candy and potatoes, and lastly even fruits.

After being truely gluten free (even food w no gluten ran on same production line as gluten containing prodocts can have 100-thousands of ppm of gluten on it, it only takes 50 ppm to keep you sick! over 20ppm is not considered gluten free) anyway after going strict gluten free at about the 6 month mark I noticed I was able to consume more carbs without problems. At 1 year I was naughtily eating candy bars often with no ill effect at all! lol

So for me it just took my body time to heal from the gluten to be able to tolerate the other foods. Hope you feel better!
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DanishD
New Member
Joined : Oct 2011
Posts : 1
Posted 10/28/2011 2:53 AM (GMT -7)
Thanks Beth...I was dx celiac three years ago...like you I was disabled beyond beyond....I couldn't figure it out...noticed a lot of ALL of the same things you and Daisy said. I too corn, soy,potatos, some GF grains, some beans and not others, some nuts and not others....I felt NUTS! My blood test was negative also , however I was so deathly ill I was being sent to infectious disease, neurology, cancer I cannot begin to tell you....I WAS dying, my mom would visit every three months and I was sicker each time, she even said she thought I would die. It broke her heart. FINALLY of all places and for a differenr reason I was sent to a GI doctor for a colonoscopy and because I had all boxes checked he decided it would be good to do an upper endoscopy also. ALAS~ at 730 as I was about to go into a test for a gastric emptying he called and my biopsy sugested I had celieac. He told me not to change my diet and sent me for the blood work. NEGATIVE! Yet the Villi in my biopsy were gone!He0 advised a GF diet and within two weeks I felt 20 percent better. I mean I was on my death bed, so 20 percent was huge...I didn't want to say anything to anyone yet, as it had been three long years of this deathly ill...at three weeks I was still holding and I was still learning of all the gluten in everything. I had eliminated a lot prior to dx with some improvement, but hard to tell often times. Celiac vs G intollerance is a big differance. Daisy, I do not think you would get that ill if it were not cileaeiac, yet some celiacs get dx much earler....I think those of us who get as ill as Daisy and I...its like NOT a question to STAY away. It is hard and others do not understand. I get cross contamination and I still think I must be nuts. So TY Daisy...

I was told by my GI that Celiac can have some GI symptoms and oth ers can have virtually every type of symptom including pscycotic... He saved my life. I went off dairy as I heard the villi heal quicker and then some celiacs can go back on after a year. WELL NOT ME... it can take two to three years to heal the intestanes. I have had two other uppers and one lower endoscopy since dx. after the first year my biopsys came back good, but still a bit bad, he also indicated he had no doubt that their were pockets that were not healed. He and any good gi knows or any good pcp knows blood work being negative means nothing. the gold standard is the upper endooscopy. Even then the biopsys could be of areas that look ok isnt definative...it can just mean the areas were not biopsyed and if it hasn't progressed as far this is more likely to come back negative.

I have prob w so many foods and I have heard it is not uncommon with celiac. about lechithin is that it...the stuff made from soy.... I cannot do soy or lechitin.....they make it from other sources if it is the same thing as I am thinking....sorry aobut spelling....I also have a TBI and a new computer that is as sesitive as me...I wish you all well....Oh I weighed 220 and wasn't eating i was so sick....the weight started melting off....I always read celicic and w the gi probs and I have them too, but other things were more pronounced I was so sick. I lost75 pounds....in a year....

I have a question do any of you know what your CRP's were....Mine were in the 20s....they slowly came down over two years to less than one... That was the only blood work that I had to o on...were normal so reg docs said i was fine....BS...mine have been going up again and I have put on 25 pounds and feeling bad. differet bad then gluten, but now up to 9 CRP and very very ill...does anyone have an idea what Im talking about....thanks oh and I have gastroperisis and IBS, not unusual for Celieac. My GI doc early on told me I will prob never feel "well". I have a lot of malabsorbtion issures I go in and out of D and iron...better over time, but wondering whats up cuz really sick...any info would be helpful...My GI doc said that CRPs are more sesitive to GI issues than ESR's eventhough there both nonspicific...
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