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Philly Girl

Hoping That Gluten Free Will Help Me!

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Hello Everyone,

This is my first post on the Gluten Free Forum but I have been reading it for a couple of months. I think this forum is wonderful and it has been incredibly helpful! Thank you to all that participate!

I have been sick with GI symptoms for over 8 years and it has been a huge inconvenience with work, school, and life in general. I have seen numerous doctors (GI, primary care, alternative medicine, nutritionist, etc.) and no one can ever seem to figure out what is wrong with me. I am noticing that this is a trend with Celiac Disease. The GI docs were always quick to diagnosis IBS and I was always told to stick to a bland diet consisting of mostly bread, crackers and pretzels (all gluten filled). Every couple years I will have the GI tests done. This past fall my blood work came back with signs of Celiac. My doc went ahead and did the endoscopy but that came back negative. My doc said that b/c of the blood work, there may be a chance that it is Celiac and there just isn't significant damage in the intestine yet. Has anyone heard anything like this before? I thought that since I have been sick for so many years, there would be signs of damage if it is Celiac? I started the gluten free diet at the beginning of January and my symptoms have not improved at all yet. I understand that it can take time but I am curious as to how long since my doc said that there was no intestine damage?

I should also mention that I tested negative for lactose intolerence but I still avoid most dairy products because they seem to bother me. I know that giving the Gluten Free diet is worth the chance - I am just wondering if anyone had test results like this before? I apologize if this was already discussed! Any feedback is greatly appreciated! Thanks so much!

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HI, If your bloodwork looks like sign of celiac then you have it. You can have a false negative, but not a false positive. I went gluten free even though my bloodwork was negative. Going gluten free for me cleared up symptoms that I had complained to my doctor for years about. Good luck and I hope that you feel better soon.

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This past fall my blood work came back with signs of Celiac. My doc went ahead and did the endoscopy but that came back negative. My doc said that b/c of the blood work, there may be a chance that it is Celiac and there just isn't significant damage in the intestine yet. Has anyone heard anything like this before? I thought that since I have been sick for so many years, there would be signs of damage if it is Celiac? I started the gluten free diet at the beginning of January and my symptoms have not improved at all yet. I understand that it can take time but I am curious as to how long since my doc said that there was no intestine damage?

This may be of help to you:

http://www.celiacdiseasecenter.columbia.ed...C05-Testing.htm

Positive serologic tests in the presence of a normal biopsy

This situation occasionally arises. The presence of a positive EMA with a normal biopsy indicates either the presence of celiac disease that was not detected in the biopsy, either because of too few pieces being taken or misinterpretation. The biopsy should be reviewed by an expert gastrointestinal pathologist. If it is considered to be truly a normal biopsy the patient may well have latent celiac disease and will probably develop the disease at a later date.

It is not at all uncommon for people with positive bloodwork to get a negative biopsy result. Damage can be patchy, and many doctors take very few samples. In the presence of positive bloodwork, I would be inclined to go gluten-free.

I hope you get a resolution to your symptoms soon.


-Colleen

Dx 8/05 via bloodwork and biopsy (total villous atrophy)

13-year old son Dx 11/05 via bloodwork and biopsy

Daughters (16 and 5) have tested negative via bloodwork

A woman is like a tea bag - you never know how strong she is until she gets in hot water. - Eleanor Roosevelt

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It is possible that you aren't getting better because the dairy you eat is hindering healing (the same goes for soy, if you are consuming it). You may be intolerant to casein, rather than lactose. My youngest daughter is intolerant to all parts of dairy, except lactose! If you are casein intolerant you won't outgrow it any more than a gluten intolerance (unless those are caused by another underlying condition like Lyme disease).

Also, if you have switched right away to all those gluten-free goodies to replace gluten ones, that could be a problem as well, as they are very hard to digest.

Some people take up to six months on a strict gluten-free diet before they see improvement, so don't give up yet.

Also, you could be glutened by cross contamination. Did you buy a new toaster? The old one can't be cleaned well enough to be safe. What about things like colander, wooden cooking spoons and cutting boards? If you use a plastic colander for gluten-free pasta (this doesn't go for metal ones) that has been used for wheat pasta before, you are glutening yourself, as it isn't possible to get gluten out of cracks (it is one of the stickiest substances on earth, they make industrial strength glue from it).

Have you checked your medications (if you take any) and vitamins for gluten? Many are unsafe.

It might also be a good idea to replace personal care products for ones that don't contain things like wheat germ oil, barley extract and oat bran.

Biopsies are not a reliable way of diagnosing celiac disease (despite it being the 'gold standard', which is not a good thing). The small intestine has a huge surface area, and to actually manage to biopsy a damaged area is just hit and miss (and you can't usually see the damage without a microscope, so looking with a little camera to pick the right spots is not necessarily helpful).

Your doctor is right with what he is saying, one of the few doctors who won't just declare that 'it can't be celiac disease' if you have a negative biopsy. I wished there were more good doctors like him around.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

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Thank you all so much for your responses! I appreciate all of your feedback!

I did replace my pots, pans, utensils, toaster and condiments. I also checked all of my toiletries and medications. I am worried about possibly being intolerant to other things though! Do you know if there is testing for casein or soy intolerances? Or is it best to just try eliminating them?

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there are only false negatives not false positives.. if the tests are inconclusive then id say get rid of the gluten.. dont take any chances

Thank you all so much for your responses! I appreciate all of your feedback!

I did replace my pots, pans, utensils, toaster and condiments. I also checked all of my toiletries and medications. I am worried about possibly being intolerant to other things though! Do you know if there is testing for casein or soy intolerances? Or is it best to just try eliminating them?

as far as i know there are tests but the thing to bear in mind is tests can be negative.. so you could try getting tested then go on a trial diet. remeber if you do want to get tested dont take the food out of your diet until after the tests.

another intolerance to bear in mind is lactose intolerance its common among coeliacs so you may want to get tested.


"great works are performed not by strength but by perseverence"

 

Diagnosed coeliac - aged 14

                  Asthma

                 Osteopinia

                 High blood calcium

                 Crohn's disease -december 2012 

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Celiac can be very tricky to detect in some cases because you here of alot of false negatives with some of the tests (depending which ones they run) Some are just better than others. Do you know which tests you had done? Either way if they came back inconclusive I would most definitely ditch that gluten. It really is not something to mess with. There is alot of risk involved long term if it is not dealt with.


Kaiti

Positive bloodwork

Gluten-free since January 2004

Arkansas

Jeremiah 29:11- "For I know the plans that I have for you, declares the Lord, plans for you to prosper and not harm you,plans to give you a hope and future"

"One Nation, Under God"

Feel free to email me anytime....jkbrodbent@yahoo.com

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