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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Toddler, Should I Do The Endoscopy?
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30 posts in this topic

My 2 year old has had a rough two years! First of all, had ear infections from 6wks to 9 months when she finally got tubes, was very small for her age and always has been. Currently her issues are:

-night sweats (and nap time ones) wakes up SOAKED

-irritability

-broke her leg- two bones- a few months ago from a very small fall (not sure if that could be related)

-fell a few months before and chipped her front tooth which quickly abscessed and had to be pulled. (she was trying to run and bless her heart she is just not very good at balance) (again, not sure if this could be related)

-swollen stomach- she is skinny but in the last year her stomach has gotten huge! still tiny body and you can see her ribs on the sides but her belly swollen

-chronic yeast infections

-rashes

-not water diarrhea, but loose stools

-blood sometimes when i wipe her (but she is NOT constipated)

-delayed development (walking and such)

-very weak compared to my other children

-Has the "allergy" look to her. sick eyes and such.

We *thought* they had ordered blood work at her Pedi but they didn't. We didn't find that out until a week later when we find out what all else they did order. All her CBC stuff looked great. Thyroid was a little off but nothing major. And she had allergy test at 1 that just showed some egg/peanut sensitivity

Well after the first blood work, we thought we would try gluten free to see if it helped while we were waiting on the results. In this time she must have gotten a cold because she felt yucky and ran a light fever. But her sweets have stopped, her rash is drying up and her stools are no longer loose, they are normal (I guess) and her over all color seems to look better to me. and she slept ALL NIGHT last night. First time in weeks!

So yesterday we found out it was NOT the celiac test that they did, so they did the blood work after 6 days of gluten-free. We are waiting on the results. Would it still show up?

And the Pedi GI doctor wants to do a endoscopy Now before she gets even further into gluten-free. should I do it before getting the blood work back (he said he wants it regardless if the blood work is positive or negative) or should i just wait and then go back on gluten when/if we decide she needs it. I just hate to do stuff she doesn't need. Part of me thinks it is just a gluten tolerance anyways.

Any advise would be much appreciated:)

Rachel

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Oh Rachel, your poor wee baby. My heart was just breaking as I was reading your post. What a time of it she has had, and yes, it does sound very much like it was all due to gluten. Soft teeth, broken bones, yeast infections, really skinny but bloated belly, rashes, loose stools, delayed development, weakness, what sounds like gluten ataxia (poor balance), irritability, unexplained fevers, muscle weakness, abnormal thyroid values, I would be amazed if her blood work was not positive.

Now to the endoscopy question. It is really your choice if you decide to put her through the endoscopy (although it is not as bad as most parents imagine :) ) She will be well sedated and will not remember anything. The big question is whether or not your ped. GI will give her the diagnosis without the endo - some will, some won't. As a wee one, she is going to need special provisions made for her going through play center, kindy, school, college etc., and schools really want to see that piece of paper with the diagnosis on it beore they will comply with the ADA requirements. To have the diagnosis will make her life much easier. Talk to your GI and ask him why he wants to do it when you already know what the problem is, and see what he says. If you take her off gluten now, and later want the diagnosis, she will have to eat gluten for 2-3 months, which I am sure she will find intolerable after recovering from it so it really needs to be done now if it is going to be done. One week off gluten will not make any difference to her test results, but take it out 2-3 weeks and it well could. If she is going to have the endo she needs to go back on gluten now until it can be scheduled, unfortunately.

Welcome to the board, by the way, and there is no such thing as "just" a gluten intolerance. It is a very major deal and it is always useful to have a baseline endo for damage so that her progress can be monitored in future if necessary.

Talk it over with your docs and your husband and I know you will make the decision that is right for your family and child. :) Best wishes for your wee girl growing up strong and healthy, and do keep us informed of how things go.

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Shroomie said it very well.

I just want to make sure it is clear... If you do the endoscopy she must be eating gluten! Gluten can be a "trigger" for other disorders too.

A gluten challenge can be very dangerous, watch for signs of dehydration. In fact have a dehydration symptom check list on hand.

Honestly I feel a gluten challenge is more of a concern than the endoscopy with biopsy.

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Mushroom: Thanks for the reply. I do at times think I want an official "diagnosis" so that when she is older she will not question it and neither will other people who are giving her food thinking that it was "my" diagnosis. I do stay home with her 24-7 though and we home school, so as far as worrying about that, it is not my main concern. The only time she is given food out of my sight is at church in her Sunday school class, so last week I just sent some gluten-free cereal for her to munch and she did well with it. The GI pedi said he wanted BOTH test to diagnosis either way. He also told me that there was no way she could have had it as an infant (gluten) because it doesn't go through breast milk and I am questioning that. I thought it did? Also, once they gave me so much grief about her poor weight gain, I put her on formula at 6 months and they had me add oatmeal cereal to every bottle to help her gain (they said, which I now know much more about formula, and "oatmeal cereal" and regret everything I did for her UGH!) At this point after having so many doctors steer me in the wrong direction, I am just scared to listen to this one too :(

Mommida: So are you saying the biopsy would be pointless at this point? She will be gluten-free for almost 2 weeks at the time of it. Should I put her back on it today, which would mean she would have it for the 5 days before it and only went gluten-free for a week at most?

Also not sure if I mentioned, but he wants to do the colonoscopy while he is in there he said but I am not crazy about that. His reason is because of the Blood. what do you think?

Thanks again for all the help. This web site is the ONLY Place I have found help!!!! (through reading all the post and stuff)

Rachel

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Also, we grind our own wheat and all that. A friend of mine was just diagnosed with celiac and told me that even Emalyn breathing it could make her sick if she had it. The doctor said no way. That as long as she doesn't eat it. I just wish that there were more point blank directions for me instead of some telling me one, some telling me another

FYI she slept all night AGAIN last night and her night sweats are still gone! I can't believe it. After her being so soaked every morning and after every nap.

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I do think it would be pointless getting the scope done without eating gluten. Especially when Celiac is your top suspect.

I don't argue with peeps when they say breathing in gluten made them sick. How much gluten will make a person sick? The amount that your body recognizes it and sets your immune system out to attack it.

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So honestly should I back the procedure to a later date and put her on full gluten for the time being?

Oh she is not saying it makes HER sick, that she read somewhere it could. I don't know enough about it to know either way- That is just what the doctor said yesterday.

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Some Mom's DO pass gluten through breast milk, some do not.

I don't think it is so much the breathing of gluten that is the problem. I think it is more of the "flour dust" settles, gets touched and then into the mouth via eating etc. Esp. with kids who put EVERYTHING in the mouth! But my understanding of ingestion is a bit more liberal than some as we deal with allergies and ingestion with ANY mucous membrane can lead to an anaphylactic reaction.

If you want an official dx for school down the line, I would put her back on gluten ASAP (it's only been 6 days off, right?). Get the endoscopy in 6-8 weeks and decide at the time if you want to do gluten-free or not.

I know others are saying "Oh, Celiac!" and she does have a lot of the signs and symptoms but she's also a baby. Some of those things listed are NORMAL for little ones.

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Yeah I think a lot of her symptoms could be typical toddler stuff (like the fussy stuff)

I got her results from the blood work today; Keep in mind she was off gluten for a week prior, so I am not sure if they are even valid! :( But the nurse (from the allergy doctor that ordered them) just said they were fine. So I asked what the numbers were here they are:

Tissue Transglutaminase 3 (<5 is negative)

Glibin(deamidated)ab 5 (<20 is negative)

IgA 96 (range 24-121)

Edited by rachelh4207
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Everything I have read says that gluten is passed through breast milk. And yes, if the oatmeal was not gluten free she could have reacted to that too. If you are grinding wheet, there is going to be flour in the air and she will not only be breathing it but it will eventually settle and land on food and utensils and the floor and will actually be everywhere :o

You will need to get a copy of her test results and see what tests were run and what the ranges were. Thrre are five tests in a full panel so they did not run them all. Probably the tTG IgA and IgG and the total serum IgA (they have a bunch of fancy words they use with these depending on the lab). They do sound like they may be within the normalish range. If the nurse calls you back ask what ranges the lab used too because the raw scores are meaningless without that. . However, there is one test that probably was not run,. the DGP (deamidated gliadin peptide) which is really the best test to use in young children and the most specific for celiac. Bear in mind, though, that testing in young children it is difficult to achieve an accurate result.

It is possible to test negative on blood work and positive on biopsy. And if you put her back on gluten today until the test it should not affect the results. Normally one week is not long enough for healing to take place in the small intestine. But the biopsy could still be negative, especially because of her age and the results at her age being notoriously inaccurate. At least the biopsy would show if there is anything else going on in the upper intestinal tract. And it certainly would not indicate that gluten is not her problem either. Her symptoms are not predominately GI symptoms, and the gluten could well be attacking her neuological systems - muscle weakness, balance problems, delayed development, etc. When this is the case, celiac is always harder to diagnose because doctors tend to think of celiac as being a gastrointestinal disease only. However, I still think if I were you I would go ahead with the biopsy and then take it from there.

If she improves on a gluten free diet, and starts developing normally, after the biopsy, then you will know that gluten is the problem and when she is older you can have her do a gluten challelnge.

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Okay, I see we cross-posted and they did do the DGP. And the last one is the total serum IgA to make sure she is a normal IgA antibody producer, which she is. But it is still possible to have a positive biopsy result with negative blood work, and it is still possible for gluten to be the problem even when all testing is negative :( If you decide to proceed with the biopsy (and resume the gluten until then), do put her gluten free right after the biopsy and keep her as free as you possibly can (maybe grind the wheat for the rest of the family someplace else where it will take the flour out of the house) and give it a good three months to measure her response.

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and it is still possible for gluten to be the problem even when all testing is negative :(

THIS is why I am stressing out. :( I mean we do go above and behind (or try too) to make sure I cook every single thing the girls eat and make sure they eat healthy and balanced- and we had been under the impression that whole wheat was a good thing...now that I know it could be horrible for her, I want to KNOW since it is such a big part of our life:( I thought about buying bread for everyone else and not making my own anymore for the time being (if we stay gluten-free) I gave her half a piece of bread today (first gluten in over a week) hoping she would show me a sign if it was bad for her- but I know that with celiac it could be reacting, just silently....hurting her internally.....being a parent in a situation like this is sooo hard!

I am not saying money is a deciding factor, but If the test could be negative anyways (from doing gluten free) it makes me NOT want to pay for it and go through the whole ordeal just to be told that she needs to get on gluten and re-peat it. I am scared to ask how much all this is going to cost when it is all said and done (we are still paying for her leg and still have more follow-up with a pedi orthopedic since the leg is not healing straight)

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I really don't think that being off gluten for a week will turn a positive test into a negative - it's just not long enough. I meant that because of her age the testing is not terribly reliable, and there is a 20% approximate error rate in the testing anyway. I meant that with neurological symptoms you don't always get a positive gut result, and I meant that some people will never test positive for celiac disease but are nevertheless gluten intolerant. :) It is all so difficult, this celiac thing. And I do appreciate your problems particularly in doing everything you can to provide health for your family, going far above and beyond what most parents do, and it's still hard to get it right :rolleyes: I would think that if you were going to retest her in the future, you should wait until she is a little older when the chances of accurate testing are higher (but still no guarantees). At that point she would be old enough to understand the process and its importance to her. But I would definitely keep her off gluten after all testing is completed, at least until you have proved to yourself that gluten free is not helping her.

I am concerned that her leg is not healing straight, and that she broke both bones so easily in the first place. Do get her vitamin D levels checked because low vitamin D can lead to osteoporosis and brittle bones, and she may need vitamin D supplementation, even at such a young age. That's the curse of celiac, it can prevent the absorption of necessary nutrients and in growing wee ones these nutrients are so important. She probably needs a complete nutrient blood panel, in fact.

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well after much stress and prayer- we decided to do the test. It is tomorrow at noon. Will let you know how it goes. I am not planning on finding out much truthfully- just think after being off the gluten it could make it harder to diagnosis. Because of the colonscopy, they have her on liquid diet yesterday and today so haven't been able to get gluten in her anyways.

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everything went well with the procedure and we will have the results within the week. thanks so much for all the help everyone:)

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I'm glad it went so smoothly. :) Fingers crossed

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I was of the understanding that it's pointless testing bubs 2 and under because it's so unreliable. My nephew is 10 months old now and since his mum went gluten free he became more settled and put on weight. She did the elimination diet and by that time my mum and daughter had been diagnosed with it so we thought it was worth a try. When he is older they will test him.

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I was of the understanding that it's pointless testing bubs 2 and under because it's so unreliable. My nephew is 10 months old now and since his mum went gluten free he became more settled and put on weight. She did the elimination diet and by that time my mum and daughter had been diagnosed with it so we thought it was worth a try. When he is older they will test him.

I believe it is pointless. But after going back and forth on it for days we decided to do it- but we are still treating it like it is celiac even if it is negative. She is gluten free now and doing much better already! I would LOVE to know *forsure* so that I can know if I need to be worried about my other girls also.

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I would LOVE to know *forsure* so that I can know if I need to be worried about my other girls also.

I don't think any test can tell you "for sure."

Doctors don't agree on whether gluten intolerance belongs under the subheading of celiac, or vice versa. Some think they are two completely separate conditions, while others believe that gluten intolerance is simply early-stage celiac.

Genetic tests can indicate likelihod, but plenty of people without DQ2 and DQ8 alleles have either full-blown celiac or "just" gluten intolerance with symptoms at least as severe as those of someone with biopsy-diagnosed celiac.

Environmental triggers play an enormous role in triggering celiac, no matter what the genetic predisposition.

If your other daughters have the same gene pool, the same general diet, the same home, the same schools, etc. then they are facing the same environmental triggers.

It doesn't mean that they will all develop celiac.

But it means that you should be on the lookout for any symptoms that might indicate a problem with gluten. Yes, this means the obvious intestinal symptoms, but there are other symptoms as well, and for some people, the autoimmune reaction mysteriously skips the intestines, or for some, their intestinal damage is "silent," meaning that they have damage but no discernable symptoms.

Other possible symptoms of celiac:

eczema/psoriasis

thyroid issues

type 1 diabetes

joint pain

migraines/headache

vestibular issues (dizziness, tinnitus, etc)

neurological issues (including depression and bipolar disorder)

unexplained weight GAIN

carbohydrate "addiction" (particularly to wheat, obviously)

repeated candida infections

anemia

unexplained vitamin deficiencies (for example, in spite of supplements, which would indicate malabsorption)

small stature

ADD/ADHD/Asperger's/autism diagnosis

unexplained tiredness/exhaustion

I'm probably leaving a whole bunch out. I'm sure someone will fill in whatever I'm missing!

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I don't think any test can tell you "for sure."

Doctors don't agree on whether gluten intolerance belongs under the subheading of celiac, or vice versa. Some think they are two completely separate conditions, while others believe that gluten intolerance is simply early-stage celiac.

Genetic tests can indicate likelihod, but plenty of people without DQ2 and DQ8 alleles have either full-blown celiac or "just" gluten intolerance with symptoms at least as severe as those of someone with biopsy-diagnosed celiac.

Environmental triggers play an enormous role in triggering celiac, no matter what the genetic predisposition.

If your other daughters have the same gene pool, the same general diet, the same home, the same schools, etc. then they are facing the same environmental triggers.

It doesn't mean that they will all develop celiac.

Wow what a helpful post seriously. I am So very (obviously) new to this and really appreciate the post. I am actually starting to believe Emalyn has a tolerance issue to milk and eggs now that I am more aware of the stuff. I have cut out a lot of things and let her have milk after two weeks without it and she had issues. Sometimes I get so over-whelmed at all of this. If there are any books or anything that you recommend, please share and I will get them. I know there are plenty out there, just wanted to see what you all recommended. Thanks again!

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Hi there!

I'm a newbie...my twin girls (fraternal--so as alike as your kiddos) will in all likelihood be confirmed celiac this week (they have high ttgs, the gene pair, plenty of symptoms--although each girl has a unique set of symptoms).

My favorite book is Celiac Disease by Green--I paid extra on Amazon to get two day shipping and read it in a weekend. My second book is gluten free kids by Korn. It's written by a mom and has lots of parent-views on the topic (like what to do when a kid "cheats" on a gluten-free diet).

Hope that helps!

Wishing you all the best!

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Well doctor called and biopsy was negative. So that is a good thing that she doesn't have internal damage, but I still do not know what to think. I *knew* going into this that the test could be negative and mean nothing, BUT now that the tests are negative, I am thinking, "Am I imagining all this??" :(

I guess the only thing I can do is keep on the gluten free diet and then give her some in a few months, right?

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So we are still Gluten Free for three weeks now. She has had gluten TWICE when I was thinking about putting her back on it for the biopsy. So these are the changes (i think)

-Night sweets/nap sweets almost completely gone. They stopped within three DAYS of stopping gluten. She has sweet a little during nap but our air has been messed up and it has been around 75 in the house so I am thinking that is why.

-Walking much better on her leg and trying to run now! Seems more energized seriously.

- Sleeping better at night and when she DOES wake up, she doesn't scream bloody murder. She just comes to our bed room.

- Much friendlier and has not been so moody and so easy to "set off" I guess you could say. My other daughters use to have to walk on egg shells with her at times.

- Stool has been much firmer most all the time but not every time.

- Stomach has went down a lot BUT she did have to do a liquid diet for three days so that might have helped with that....

Okay so one other thing, when I gave her cows milk (after two weeks without it) she got a little sick and also one night after she had eggs for dinner, she screamed most of the night.

So with negative blood work (after a week of gluten free) and negative biopsy (with two weeks of gluten free) Where do I go from here? How long do I give the diet a try before doing a "test" to see if she reacts? or do I just keep gluten free and don't look back?

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Hi there! No, you're not imagining things--although I would be asking myself the same thing in your shoes. Also, my DH really pushed me on my observations--he was skeptical of all that I was seeing (or maybe from his point it was imagining). So, some double-checking of thinking is healthy.

I'm a newbie, so here are some of my thoughts (based on my experience with my twin 5 yr olds):

- Gluten affects the neurology of children (especially our Twin A)

- Gluten seems to affect the sleep patterns of some children, sometimes in opposite ways (Twin A sleeps like a log--possibly because her body isn't getting enough nutrients. Twin B slept through the night a total of 5, yes five nights between birth and two years old.)

-Gluten seems to affect Twin B's joints (note that I forced the pediatrician to get a rheumatology order to rule out arthritis)

- Many people say that lactose intolerance and gluten issues/celiac disease often go hand in hand (including our Pediatric GI who is a Celiac researcher)

- It's fairly well documented that tests for children at 2 yrs old are not necessarily reliable, try to get a celiac expert to see your child (Dr. Pietzak at USC/Children's Hospital LA is excellent).

- If being off gluten works for your child, that is good news!

One scary thought I'm going to put out there based on some of the reading I've done and watching a friend with cancer (who by the way survived and is thriving): night sweats were one of her symptoms. Also, limping in children should be well examined to rule out horrible things like bone cancer. I spent a lot of time trying to figure out if our Twin B had more than "growing pains" and had to really push the doctors on this.

Most importantly, you're a great Mom, on top of things, figuring out your little one's puzzle. Hang in there! It took us 2.5 years to get many of the answers we were seeking!

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    • There is currently not any enzymes you take that will get rid of gluten, they are working on a promising one to reduce symptoms but all others out there right now are a bust and will not help you much if it all with gluten exposure, Celiac is a auto immune disease, your reacting to the proteins of gluten and it is attacking them and your own body.  I do suggest a digestive enzyme if you have food issues in general to help break them down. But this will not fix gluten exposure, reduce damage from gluten, or make gluten eating safe by any means. These current ones on the market are FAD ones target at healthy people and helping them with general digesting of gluten proteins but will not help you if you have celiacs to eliminate gluten reaction symptoms.
    •   Could try causally asking your family to get the blood test done next time they are at the doctors. They could have it and only have minor or no symtoms to it. There is a form of it called silent celiacs with no outward symptoms but it is still destroying your villi and causing your body to slowly degrade. Doing so could shed some light on other issues, make family more understanding to your issues, and help them out in the long run.    I was adopted at only a few weeks old, so my issues run a bit deeper with both leaning about this disease and getting anyone in the family to understand it. Does not help my birth mother still to this day refuses to release updated medical records or accept any kind of contact.    >.> I give advice all the time, I like to feel useful to others, and can be oblivious to others feelings and reactions due to a form of autism called Aspergers.  Bit of a pain, but the feeling of being of use to others is very rewarding even if sometimes confused with being helpful over being a ass or someone overly intrusive.    I just wish others had helped me out earlier with this disease.   PS Anonymous, you keep posting on older threads, ALOT recently. Not a bad thing, just something I picked up on and piqued my interest/concern with how out of date some information might be.
    • Hello Anonymous, and if nobody has said as much yet, welcome Don't worry (difficult to do when it can cause anxiety :P) it's very early days and you have a lot of healing to come.  If you've not already seen it there's advice and further info here:    It gets easier over time as checking becomes routine, you know your 'safe' products and your eating pattern changes. You'll get there  Maybe start a thread of your own if you'd like some input from others? Finally, back on topic. My Aunt has narcolepsy and although she's fiercely resistant to giving up gluten she has now made a connnection to eating bread and it's onset. As often, not conclusive but suggestive...
    • Hello again   Well first thing is the - Usual disclaimers apply... and this is something you have to follow up with your doctors as you know. But it's helpful sometimes to get another perspective so here's this layman see's from outside.  What I have seen from the various results posted here is that people's numbers vary wildly and, just as important, the numbers often don't bear any direct relationship to the level of intestinal damage revealed via endoscopy. Ultimately although you're not scoring much above positive, you are scoring a positive  and there are a couple of other risk factors you've mentioned that are suggestive if not conclusive - you have another autoimmune which raises the odds of having another one for example.  You've had two tests that are positive. The purpose of taking the second test was either to invalidate or confirm the first. I'd suggest it's achieved the latter, at least inasmuch as a GI may want to check you via endoscopy. That's still the 'gold standard' of celiac diagnosis and would give you an idea if there's any intestinal damage. I suspect with 2 positive tests and the history above that's what they'll suggest.  If your doctor or GI doesn't want to proceed with that you have a decision to make. Push for a second opinion or new doctor or if you're done with testing give the gluten free diet a proper try. Make a journal and see if some of those subtle things you reference may actually be symptoms. Fwiw, there are a lot of people here whose thyroid issues improved dramatically once they were gluten free, so whether celiac or gluten sensitive you should certainly give the diet a try. Only however once the testing is completed and remember: 
    • Hi! I've just been recently diagnosed as Celiac through the whole biopsy-shebang, and I have a little bit of insight on the whole diagnosis thing and how I was eventually diagnosed, and my advice for you. Brace yourself, this might be a bit long, but it might be worth the read and I promise I will eventually get to the point. If you don't want the huge story, skip to the long line of capital As: I first saw my doctor when I had a few problems swallowing. I've compared it to when you're nervous and you feel like you have a lump in your throat - but after I eat and (sometimes) drink. I just mentioned briefly it to my family doctor when I was addressing another issue, but right away he referred me to a gastroenterologist and ordered a barium swallow x-ray test. The x-ray came back completely normal, and so the g.e. then suspected GERD, put me on acid blockers to see if they would work, no harm done sort of thing. The only thing I got out of the acid blockers were the side effects, so it was back to square 1. The g.e. said that the next test he could do was an upper endoscopy with biopsies. (hint: the celiac test!) Wanting to find a solution to my problems, the endoscopy was scheduled. Pretty painless, I was in and out in a day, but the results took much much longer. Biopsies, or the little pieces of my esophagus, stomach, and small intestine, were sent to the lab, and they came back clean. I didn't really go back to the g.e. for a whole year after that because life became busy, I wasn't prompted to follow up, and I just dismissed the swallowing problems the best I could and went on my way. Now, I've never been huge on the gluten, big bread-y sandwiches or croissants or pies were never foods that I super "enjoyed". I wouldn't feel bad after eating them, I just didn't like the taste of bread so much, but I loved cookies, cake and a lot of other things that do have gluten in them. I lead a lowish gluten life but I wasn't really monitoring it that way. Everything changed when I got really nasty (systemic) poison ivy. My eyes were swollen shut, and the rash was everywhere. I almost went to the hospital, but cooped out at the family doctor's place and got a script for prednisone (a steroid). But, I found that after I had tapered off the steroids, I had magically become lactose intolerant. So back to the family doctor again probably because I broke my toe or something, but we also got to talk about this magical lactose intolerance business (because I love anything dairy and it was indeed devastating). He was surprised as there is literally no correlation between steroids and becoming lactose intolerant. He asked me if I still had the swallowing problems, which I did, and so it was back to the g.e. for round 3. because my family doctor "does not believe in coincidences". Meeting with the G.E., he mainly addressed the swallowing problems telling me that he had done what he could to diagnose with the technology that we had at the highly specialized hospital that we were at, and I would have to travel about 3 hours away to see a different doctor who would do some tests involving the muscles in the esophagus. But right before I was about to leave, we started talking about lactose intolerance. He brought up other foods that I was avoiding (if any), and then the conversation went to gluten. I mentioned that I had an aunt that was gluten-sensitive. He advised that I do the blood test that can show an indication of celiac whenever in the future. I decided to do it that day. At this point in time, I was not eating much gluten because of the fact that it was personal preference. The normal range for values in this test is from 0 to 20. A few weeks later, I learned that I scored a 35. A second upper endoscopy with biopsies was scheduled, but this time I was told to eat a moderate amount of gluten everyday before the procedure. I ate about two slices of bread per day, which is more than I normally would. I was normal for the first two-three weeks of the gluten plus diet, but then I became really sick. I started getting the normal celiac symptoms, like diarrhea and extreme tiredness. Near the end, I had debilitating stomach pain and I was 2 times more asleep than awake each day. I couldn't do the 2 pieces of bread a day some days, but the pain was still there. I knew that I wouldn't ever have to force myself to eat bread for a test ever again. I was called a few days before my endoscopy telling me that a kid in a worse state than me had to take the OR during my time. I forced myself to eat more bread for another month and a half. The day finally came. I was diagnosed celiac, which I have concluded to be initiated by (1) the steroids/poison ivy and (2) the gluten binge fest.  AAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAA Celiac Disease isn't completely understood yet. Most of the time if you weren't showing symptoms when you were a baby (so your case) it means that celiac was/could be triggered by an event in your life that causes stress on the body (like stress, physical injury, etc.).  The positive result that you got from the blood test doesn't automatically mean celiac, but it could. Here's some options: Talk to your doctor (or a different doctor) or even a specialist gastroenterologist (you can get a referral from a family doctor (general physician)) and see if you can do the blood test again, you have to have some kind of gluten for this to work in advance, so if you don't want to break your gluten-free streak, than don't really invest in this option. If you feel comfortable, you could even ask to do this test under a few scenarios (no gluten (now) and after a gluten binge, compare results). If you do this test and your indication is low off gluten and then high after gluten, I'd probably skip the biopsy. That's a strong enough sign that you don't need to put yourself through the painful-gluten binge. Maybe this is what that first doctor just assumed. But having that test when you haven't had any gluten could make the difference - it acts as a control. Go straight to the biopsy. You could do this, but I'd probably do the blood test first. I went through a lot of stress with the gluten-binge that you have to do to get an accurate result, you would also be breaking your gluten-free diet that may/may not be helping you right now. Do nothing, stay on your gluten free diet hoping that it is helping you. But if you are not celiac or gluten-sensitive (celiac before it starts to wreck your small intestine), going gluten free isn't healthy - you can do some research on this if it interests you. If you feel bad/unhealthy after going gluten free it's probably a sign. Good luck, also know that you might come to a point of stress in your life that can start celiac's destructive path. Ultimately, it is your body, and you should not feel forced or hesitate to act on health issues that impact you.
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