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Does Gluten Intolerant Mean Cd Will Kick In?


Jeepster

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Jeepster Apprentice

Here's the simple question and I'm sure the answer won't be as easy:

My anti-gliadin blood tests came back highly positive but my intestinal biopsy was negative. My GI doctor said they were false positives and not to worry about going gluten-free, just take Immodium as needed. (Unfortunately that would have been everyday!) He blamed it on stress. I researched the issue for myself through this board and other websites and believe I am gluten-intolerant.

What I need to know is for a gluten-intolerant person, if they cheat now and again will celiac disease kick in at some point? How much cheating is too much cheating?

On a positive note I have been able to stop my diarrhea altogether just by limiting my intake of gluten and other foods I am mildly allergic to. But is this enough?


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Lisa Mentor

Sounds like this one is for your Kaitie.

Lisa Mentor
Sounds like this one is for your Kaitie.

<{POST_SNAPBACK}>

Until others that know more about your testing will kick in, I will tell you that ANY Cheating is damaging.

If your truly have celiac disease, you must be totally gluten, wheat free...forever. I know that is probably not the answer that you want to here, but it is the "stripes on the tiger".

Try to go gluten-free totally for one month and see if you see any (even the slightest) change.

Immodium only soothes a problem. Find out what the problems is.

I wish you luck in your quest for answers. Lisa B.

KaitiUSA Enthusiast

My guess is you HAVE celiac now. Biopsies can rule celiac in but they can't rule celiac out. It's a hit or miss on whether it will come back positive. Your intestines are huge and the doctor can't sample it all so if there is sporadic damage they can easily miss it and if it is in beginning stages then there may be no damage yet.

Blood tests are usually the first clue. If you had the full panel done and had positive results I would go gluten free now because the damage will start to occur otherwise.

Any bit of gluten causes damage. I mean even little bits from shampoo that can get into your mouth while washing your hair...and washing your hands with gluten containing soap and then preparing your food...things like that can really cause damage.

For someone who is gluten intolerant...it can turn into celiac if the diet is not followed. If you have the gene especially...without the gene and gluten intolerant there has been debate on whether it can actually turn to celiac but my personal opinion is that it is very possible.

Your doctor sounds like the typical doctor promoting drugs. Drugs do not cure anything..they cover up the root of the problem and cause another problem in the process. I would not go popping pills.

I would for sure go gluten free 100%. It's an all or nothing thing though. They say even having gluten as frequent as once a month is just like not following the diet. Any bit causes damage and it takes some time for that damage to heal and to keep putting gluten in you just keeps creating damage and you will eventually have tons of other problems then.

Not following the diet leads to you 40-100 times more likely to develop cancer, diabetes, and other life threatening and disabling things. Not only that but untreated celiac knocks an average of 10 years off of someones life.

Hope this helps you out a bit

happygirl Collaborator

Jeepster,

I was in a similar situation to yours. Had highly positive blood work, and was told to go on a gluten free diet immediately. Had the biopsy over a month later, (and there were issues with the biopsy not being done correctly, samples not being taken from more than one site, plus I had been sick for a relatively short time, etc,) and it came back negative. The nurse calling with the results said "You don't have Celiac" which of course confused me. But, the doctor said based on my bloodwork, my positive reaction to the diet, and the circumstances of the biopsy, that I did have Celiac. And trust me, I know if I have the tiniest bit of gluten in me! So I am a prime example of what Katie said. I would definitely recommend going on a strict gluten free diet. It has changed my life. And I get all my info from this great site! Good luck...

Nevadan Contributor

I agree with the others that you should probably be gluten-free. One current school of thought is that celiac disease is only one manifestation of Gluten Sensitivity, so even you turn out not to have celiac disease your tests point to GS. There is lots of evidence of people with GS who don't have celiac disease but still have some pretty bad autoimmune diseases due to consuming gluten. A good book covering this aspect is "Dangerous Grains..." by Braly and Hoggan. It's a good read and only costs ~$10 at Amazon.

George

aikiducky Apprentice

Another thing to bear in mind is that the intestinal damage is not something that happens all in one go. It's possible, and IMHO highly likely, that you're in the beginning stages of celiac disease, when there just isn't a lot of damage to show YET. So if you stop eating gluten now, you'll be one of the lucky few to have caught on early, and prevented a lot more serious complications later. Those elevated antibodies didn't come out of nothing...

If you don't feel convinced, there's always the option of not going gluten free. if you're lucky, the doctor is right, you don't have celiac disease, and nothing happens. If you're unlucky, you do have beginning celiac disease, and it will get confirmed later when you've had time to damage your intestines to the point that it shows in a biopsy. By then, it will be much more difficult to recover though.

Hope this helps. You can see I'm biased one way. :)

Pauliina


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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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