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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.

Gluten In Breast Milk
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24 posts in this topic

Anyone else have a child that clearly was getting gluten through breast milk and very seriously reacting? 

 

That's how it all started with us.   No one ever suggested I take gluten out of my diet and I had no idea what Celiac even was. 

 

It got so bad that my LO stopped eating for days before the doctor finally had me put him on hypoallergenic formula. 

 

I get so many comments from doctors like "gluten can't pass through breast milk" to "kids can't get Celiac symptoms until they're much older"  which is all clearly untrue.

 

Just wondered if I'm alone over here! 

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From the University of Chicago Celiac Disease Research Center:

Q: Is gluten found in breast milk?

A: There is little to no human research about the effect of gliadin, which is the portion of gluten that passes through breast milk. However, in animal studies it has been shown to have a protective effect, or help the child build up a tolerance to gluten.

We don’t know for certain, but the best evidence we have indicates that a child who is at risk for celiac disease being breastfed by a mother who eats a normal diet would not be harmed by this, and in fact, might be helped.

Regardless, we do know when it is best to introduce gluten into the at-risk child’s diet. For more details on that, please see our Winter 2010 newsletter.

 

http://www.cureceliacdisease.org/archives/faq/is-gluten-found-in-breast-milk-2

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Here is another reference: http://celiacdisease.about.com/od/celiacdiseasefaqs/f/BreastMilk.htm

This source is a medical writer, and not a doctor.  I was not able to aquire the sources that she referenced.

 

Here is what nutritionist Tricia Thompson says: http://www.glutenfreedietitian.com/newsletter/gluten-peptides-in-human-breast-milk-implications-for-cows-milk/

 

Is it too late to reintroduce breastfeeding? 

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Here is another reference: http://celiacdisease.about.com/od/celiacdiseasefaqs/f/BreastMilk.htm

This source is a medical writer, and not a doctor.  I was not able to aquire the sources that she referenced.

 

 

 

 

But, it should be noted that first .com article draws an illogical conclusion from the valid information that is published and available.

No other VALID source agrees with her inflammatory first statements.

Question: Can There Be Gluten In Breast Milk?
Answer: Yes, gluten has been found in human breast milk. This means that if a non-celiac mother is nursing a baby or a toddler with confirmed celiac disease, the mother needs to maintain a gluten-free diet.
But does she say the nearly negligible amount that has been detected? no. This is not  good journalism.
That particular site may post misleading information about celiac, IMO. Reader beware.
 
Tricia Thompson appears to be a more reliable source.
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I have no scientific evidence to back this up, but I personally am completely, totally convinced that celiac can be triggered by gluten in breastmilk. My daughter had a traumatic birth and was put on IV antibiotics for her first week of life. I exclusively breastfed for the first five and a half months. On the day my breastmilk came in, my daughter began screaming and screaming. She screamed for hours, enough so that the hospital nurses called in the doctor because they had no idea what was wrong. After a long, horrible night, she finally fell asleep. But she was extremely fussy from then on. She had projectile vomiting, was fussy all day, and woke up twitching and screaming dozens of times each night. I took her to the doctor over and over again, and they kept saying it was just colic and it would pass. It got worse and worse until (after several months) I finally told her doctor that I KNEW something was wrong and was going elsewhere if she wouldn't help us. We got referrals to a neurologist, pediatric GI, and allergist. She had delayed reflexes, an extremely exaggerated startle response, and muscle tension that they thought could be CP. They thought the twitching might be seizures, but her EEG was normal. It was obvious to me that there was some food-related problem, but her allergy tests were negative. The GI was concerned by all the vomiting, but he did not test for celiac because she'd never had anything but breastmilk, and apparently he did not think that anything in my diet could be triggering the symptoms. I'd already eliminated all dairy, nuts, soy, and beef from my diet, and there was only slight improvement. I eventually eliminated wheat for several weeks too, but I was looking for an allergy with an immediate reaction (not thinking of celiac), and I went back to eating it after a while because there was no clear difference and I was starving. When she was about 6 months old, the GI and allergist put her on Neocate formula, a super-hypoallergenic (and very expensive!) formula. She had immediate improvement. That made it clear to everyone that the problem had been something in my breastmilk, but we still didn't know what.

Anyhow, things were great until she began solids. CP-type symptoms improved and she was discharged by both the neurologist and the GI. Once on solids, everything went downhill again. I finally did tons of research and figured out she must have celiac when she'd just turned four. I had an awful time getting doctors to listen or even run the blood tests. But once I finally found a doctor who took my concerns seriously, she came back with high positives on all tests. Her tTG-IgA was over 16x normal. The biopsy confirmed the diagnosis. She's been gluten-free for seven months now and is doing great.

I realize this is anecdotal. And things are complicated because I had clear, decades-long, awful symptoms myself that have almost gone away once I stopped gluten. Although my celiac tests were negative, it's certainly possible that my daughter was reacting to some other antibodies in my breastmilk, not necessarily gluten itself. But altogether, it seems overwhelmingly likely to me that gluten from my breastmilk (combined with the antibiotics that diminished her gut flora after birth) triggered my daughter's celiac.

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I'm still nursing my youngest (she's 2 - DX at 18 months).  Yes, ABSOLUTELY, gluten was being passed in BM.  I still remember the screams in pain.  Now that we're all gluten-free and she's still nursing the only screams come from being glutened...not from me.

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I won't even try to give you an article link.  I've seen many.  I will tell you from experience, yes there were many symptoms of Celiac when my daughter was a newborn.  Projectile vomiting, "D" diapers with mucous and sometimes it was green ~ not the light mustard color of normal breastfed newborns, very tired and pale, and she ate all the time and was not gaining very much weight at all.  She kept growing in height, but no weight gain, falling off the growth chart. Trying to start rice cereal at around 7 months was horrible.  She was constipated for 4 days.

 

Well the ignorant doctor care did nothing to help and got switched to a specialist when I questioned Celiac.  She was finally diagnosed when she was 16 months old with Celiac.

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Absolutely,  my son reacted to my breast milk when I ingested gluten.   No doubt about it.  none.  As a vegetarian, I was a heavy gluten eater during my pregnancy and postpartum to try to get enough protein (gluten protein).  As a small baby, he was exclusively breastfed, had chronic diarrhea and vomiting and terrible colic, until his pediatrician told me to do an elimination diet.  She had me eliminate dairy first, no change; then soy, no change; then gluten - and everything stopped - he turned into a much happier baby.  Every single time I tested it or made a mistake, hours later he nursed and then had explosive D and/or V.  He was breastfed until he was 3.5 years old, so there were many occurrences.  He still reacts with the same symptoms to any trace of gluten in his diet.

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I have no scientific evidence to back this up, but I personally am completely, totally convinced that celiac can be triggered by gluten in breastmilk. My daughter had a traumatic birth and was put on IV antibiotics for her first week of life. I exclusively breastfed for the first five and a half months. On the day my breastmilk came in, my daughter began screaming and screaming. She screamed for hours, enough so that the hospital nurses called in the doctor because they had no idea what was wrong. After a long, horrible night, she finally fell asleep. But she was extremely fussy from then on. She had projectile vomiting, was fussy all day, and woke up twitching and screaming dozens of times each night. I took her to the doctor over and over again, and they kept saying it was just colic and it would pass. It got worse and worse until (after several months) I finally told her doctor that I KNEW something was wrong and was going elsewhere if she wouldn't help us. We got referrals to a neurologist, pediatric GI, and allergist. She had delayed reflexes, an extremely exaggerated startle response, and muscle tension that they thought could be CP. They thought the twitching might be seizures, but her EEG was normal. It was obvious to me that there was some food-related problem, but her allergy tests were negative. The GI was concerned by all the vomiting, but he did not test for celiac because she'd never had anything but breastmilk, and apparently he did not think that anything in my diet could be triggering the symptoms. I'd already eliminated all dairy, nuts, soy, and beef from my diet, and there was only slight improvement. I eventually eliminated wheat for several weeks too, but I was looking for an allergy with an immediate reaction (not thinking of celiac), and I went back to eating it after a while because there was no clear difference and I was starving. When she was about 6 months old, the GI and allergist put her on Neocate formula, a super-hypoallergenic (and very expensive!) formula. She had immediate improvement. That made it clear to everyone that the problem had been something in my breastmilk, but we still didn't know what.

Anyhow, things were great until she began solids. CP-type symptoms improved and she was discharged by both the neurologist and the GI. Once on solids, everything went downhill again. I finally did tons of research and figured out she must have celiac when she'd just turned four. I had an awful time getting doctors to listen or even run the blood tests. But once I finally found a doctor who took my concerns seriously, she came back with high positives on all tests. Her tTG-IgA was over 16x normal. The biopsy confirmed the diagnosis. She's been gluten-free for seven months now and is doing great.

I realize this is anecdotal. And things are complicated because I had clear, decades-long, awful symptoms myself that have almost gone away once I stopped gluten. Although my celiac tests were negative, it's certainly possible that my daughter was reacting to some other antibodies in my breastmilk, not necessarily gluten itself. But altogether, it seems overwhelmingly likely to me that gluten from my breastmilk (combined with the antibiotics that diminished her gut flora after birth) triggered my daughter's celiac.

wow, thank you for sharing.  I can definitely relate and our stories are similar.   I've had stomach issues my whole life and no one ever suggested Celiac.  I just had positive Gliadin results on my bloodwork recently and now it all adds up.   The only way I figured it out with my son was by switching him to Nutramigen Hypoallergenic formula and then slowly introducing food.   Because he's been gluten free so long, I can't really get a positive Celiac diagnosis and doctors will continue to give me the "If it works for you, that's fine, but I think you might be nuts" look.   

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I registered on this site after reading this thread. I'm so happy to see others with the same questions I had / have about breast feeding.

 

My daughter is now 14. Up until last week she had heartburn and diarrhoea every day and often felt a little nauseous after eating. She's small for her age and has ADD and Dyscalculia. She also suffered from anxiety (requiring referral to a child psychologist at age 11) and has experienced many, many other unexplainable issues. None of which have ever been given much attention to by Doctors.

 

She suffered with terrible colic as a baby. She was breast fed and used to vomit a lot, cry and be generally unsettled all the time. I found her old baby book last night that had all her clinic details in it and the comments noted by the health visitor about how unsettled she was. At 6 weeks old she was hospitalised as she had terrible reflux and it used to make her lose her breath. We were sent home with a bottle of Gaviscon and the advice to keep her upright as much as possible.

 

Her height growth chart showed a substantial drop in growth over the years yet this was never questioned. We were told she was just going to be a 'small package'. I'm 5'6" and her Dad is 5'7" so they felt this was justified. I always thought we were kinda average and wouldn't have produced short kids.

 

After recently reading lots of information about gluten, I am now absolutely 100% convinced my daughter has been affected by this since birth despite being told she couldn't have been because she was breast fed.

 

She was blood tested for Celiac and that was negative but that means nothing as far as I'm concerned, she IS affected badly by gluten.

 

She has been eating a gluten free diet for the last week and the improvement in her is amazing. She no longer has stomach pain or diarrhoea. No heartburn or any of the other weird things she was experiencing. She now sleeps better and she hasn't felt as anxious as she used to.

 

It's early days for us but I have no doubt this is what we need to do. I feel huge amounts of guilt that my ignorance about this subject has meant she lived all her life being affected. I'm angry that the medical profession never picked up on this but I'm angrier that I didn't either. I'm an educated person, why didn't I ever join the dots?!

 

I don't believe Doctors are all knowing. The proof is in the pudding, regardless of what they tell you 'can't be'.

 

Because my daughter is now 14, it's very unlikely she will grow now. She hasn't grown at all for the last 2 years so I expect that's her done. I wish with all my heart I'd picked up on this and made the connection when she still had a chance to grow properly in a healthy way.

 

I thank God for the internet now, I didn't have access to all this information when she was small but I do now and can at least try to make things better for her from here on in.

 

Good luck to you all, especially those whose instincts are telling them something different to what the experts say.

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There is still a lot of hope for growth for your daughter.  My daughter was diagnosed at age and she did a lot of maturing and growing after that.  Don't give up hope yet.

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Based on my direct experience, absolutely.

Celiac and gluten were not on my radar until they forced their way on.

I had a similar experience to others:

my bf baby had what might be called colic, terrible gas, bloating, screaming, obvious intestinal pain, regurg (not spit up because he needed to burp, but curdled milk vomit), eczema. Upon intro of solids at 4 months at rec of pediatrician (cereals), terrible food "allergies" became obvious, including refusal of all food until I solved the problem. (It still took a while to convince the doc, and they still seem to brush it off as he is growing fine - yeah he is growing fine because Mom figured it out and changed her and his diet! the issue has not gone away... I digress). 

Son did  not test pos for any IgE allergies, all labelled as IgG and enteropathy and also Food Protein Induced Enterocolitis Syndrome (FPIES to other stuff, not gluten). Meanwhile, I was suffering onset of severe intestinal symptoms, flu-like, tired, brain fog, balance etc. etc. I had no idea why. I only connected the dots after I took gluten out of my diet so that my baby could nurse without reacting. I kept a three month log of his food and my food in great detail, as well as reactions.  I'm 100% sure he was reacting to my diet.

 

I gather the level of protein that passes to BMilk varies from person to person and probably even meal to meal for a particular individual for various reasons. My theory is that because of my undiagnosed post-partum induced celiac, my gut was leaking ....so more proteins may have been passing straight to my BM without getting broken down fully, hence his reactions to my BM.  who knows, but I wonder.

It has been a process. I am unDX but sure I have celiac. my son is being followed by GI specialists, thankfully, they are open to the possibility that he could have celiac disease. Not sure if we'll ever know. he is now 16 mo and gluten free for  close to the past year of his life.

 

What I am finding hard now is he is board of the food he can have and it is very tricky to introduce new foods because of his FPIES www.iaffpie.org
Curious if any other Celiac Mom's on this thread dealt with FPIES.
 

Anyway, best to you. I hope you get referred to GI docs. We have docs at the hospital who are at least following us, and having a proper conversation, as well as giving us time with a dietician. thank goodness!

 

 

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can ANYBODY send me a picture of exclusively breastfed baby poo with ciliac? The doc's think my baby might have it but she has no symptoms that seem what you guys describe. She has little rocks like sand in her poo but it is the normal mustardy color and is growing fine and everything else is spot on for a baby with no problems. She's not fussy, she doesn't vomit or spit up any unusual amounts. I just don't understand what's going on with her poo. Any insight would be awesome.

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Welcome to the forum, Bazicoon! I don't have any photos, sorry. But you know that pears can make a baby's poop look sandy, right? I don't know about looking like little rocks - that does sound a bit strange - but my daughter still has sandy-looking poop when she eats lots of pears.

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My undiagnosed at that time celiac son's poo was very loose such that the diaper couldn't contain it.  We had to stop leaving him with the baby sitter because she wouldn't clean it up enough.  She said that we would need to give him a bath and left him dirty.  It was normal for us, but clearly not for her other clients.  At that point I had never heard of celiac and was eating gluten.

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Thanks for the replies! Her poo looks completely normal except that it has the little stones in it. I have looked every where I can think of to try to figure out what is going on and I keep coming up empty handed. It is so frustrating. It doesn't seem to be bothering her at all but I want to find out what it is just in case it is Celiac or another big issue. She was born a month pre-mature and had a partially collapsed lung and I am so paranoid that there may be something wrong with her other organs.

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Also the doctors have no idea what is going on either they have never seen anything like it and I can't go to another doctor because I am on base in japan. We don't have options here.  :(

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When my celiac was about two weeks old I brought her for a checkup and her belly was severely bloated. Dr sent her straight to gastro that day to check her out. Her stomach was full of air, she had blood in her stool and was jaundice. Dr told me to stop nursing ASAP and put her on hypoallergenic formula. His first thought was severe allergies. Once I stopped nursing her she made a complete turnaround, belly went down, blood was gone, and jaundice disappeared. She did very well her first year but was very up and down once she started solids, and we got the diagnosis of celiac a few weeks shy of her third birthday. So.... In my experience though we didn't get our diagnosis until quite a bit later (partially from denial on my part), I would say yes, gluten can be passed through breast milk.

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Ditto all the people who said yes. Both from what my paediatric GI told me and from personal experience even trace amounts of gluten ingested by myself could lead to a serious glutening for my baby. Her poos would turn black and become like little pebbles that would roll out the side of her nappy. Poor darling.

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I have just identified an issue with gluten in my little one when we introduced wheat cereal last week. (Sudden refusal of food when he had been eating like a champ. Runny, mucousy green-yellow stools with increased frequency. Increased spit-up, irritability and restlessness.) I have not gotten pediatrician verification yet, but there is family history of Celiac's on both sides, so I decided to do an exclusion diet between now and his 9mo checkup in a few weeks to see if there is improvement. (It's only been 4 days at this point.) If he does have Celiac's and gluten does pass the milk barrier, I'm thinking it may explain a lot about his almost constant irritability, frequent reflux and fussiness after nursing, constant rooting, etc... since birth. I am not gluten sensitive and very much love my breads, pastas and baked goods. Looking back over meal plan and spikes in his crabby behavior, I see a corrolation between my gluten intake and his discomfort. Here is my question... does anyone have a scientific idea of how long it will take to rid my milk supply of gluten? And, as selfish as it is, after I am systemically clear, does anyone know if it is possible for me to occasionally indulge and know how long that little treat will take to process out again? (You know... like how you can have an adult beverage while nursing as long as you wait a couple hours and pump'n'dump before nursing again.) If I have to be completely gluten-free for the next 17 months, then so be it. But, if I can sneak in a cranberry bliss bar this Christmas without hurting my boy, it would be nice.

Edited by ChristiM
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Welcome to the site, Christi.  The gluten takes a bit to get out of your system so there's no option of "sneaking" a little gluten treat and going back to nursing.  Oh, how I wish it was a simple pump and dump situation!!

 

If you truly think your boy is having an issue with gluten you might want to "gluten light" him for the time and then consider blood testing him in the future.

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That's what I was afraid of. We did get the blood test done, and it did come back negative. But, since I had already eliminated gluten from our diets for a couple of weeks before the test, resulting in a noticeable improvement in behavior, sleep and appetite which is only continuing to improve, and because he's so young, his doctor has us going gluten free until he is closer to 2 and we can do a better controlled reintroduction and test. I guess I'll just have to figure out how to fake it until then. Thanks for the response.

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Please consider getting yourself tested before going gluten free or gluten free light for your nursing baby.  I went gluten free for my nursing baby for similar reasons as others listed above - chiefly my sanity for caring for such a sick, fussy, miserable baby when exposed to gluten!  I NEVER suspected that *I* had a gluten problem.  And given your history, you may not.  But I never thought that I would be unable to reintroduce gluten after going gluten free for my nursing baby.  That thought just *never* occurred to me back then!  I thought it was like taking  a year or two off from eating apples . . . no big deal.  not . . .

It would have been really helpful in our family's journey for me to have had the full panel of celiac tests done *for myself* before going gluten free for my child.

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Breastmilk has mother's ANTIBODIES in it.  (From research I have seen it also has gluten in it.)  It is possible your baby's gluten reaction symptoms are from you.

If you weren't Celiac or gluten sensitive before, you could be now.  The stress of the pregnancy would be a likely trigger for auto immune disease.

There is also another scenario for how a woman's body changes genetically, fetal maternal micro chimerism.  You can actually have DNA deposited in your body that matches your child ~ completely different from your own DNA.

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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.
    • I'm sorry that life is so hard right now. Really.  I can't imagine working 3 jobs and trying to manage this terrible illness.  I think about American society and their obsession with food often.  Whenever you look at the internet, there are all these fabulous gluten-free recipes, but when you don't have time or money to cook these things, a simple gluten-free lifestyle is just that - simple. There isn't a lot of variety, so it's kind of boring. But, I guess I have gotten used to being boring. I just eat corn chex and fruit or yogurt for breakfast. I eat a lot of eggs, beans, rice, corn tortillas, nuts, chicken, fruit and veggies.  A loaf of gluten-free bread will last me 4-6 months in the freezer.  I buy a bag of dried beans for $1.29, I soak them overnight, and put them in the crockpot the next day. I add different spices, sometimes chicken and Voila! - dinner is ready when I get home from a long day. Family gatherings are miserable and I haven't quite figured out the best way to deal yet. If my grandmother were still alive, I imagine she would be a lot like yours - well-meaning but not really able to understand the nitty-gritty.   I just reassure my family that I am fine and that they really shouldn't do anything special for me. I bring a bag of Hershey's kisses or other gluten-free candy I can nibble on along with my meal and then I try to treat myself to a nicer home cooked meal later in the week when I have time to cook - because who has time to cook during Christmas???? And, I agree with knitty knitty. If someone else in your family/friends were gluten-free for medical reasons, it would make socializing a bit easier. One of my husband's good friends is NCGS. When we get together as a group, we can make each other special dishes and it helps to feel less isolated.  Good luck!  
    • Hi!  Um, please forgive my quirky sense of humor..... Celiac Disease is genetic... All first degree relatives of people diagnosed with Celiac Disease should be tested for the disease, too.  Gall bladder problems are often associated with Celiac Disease.  Your diagnosis might save your whole family from further medical problems as they age and the disease progresses... You need to set a good example if relatives are similarly diagnosed.... and then everybody will have to eat gluten free at family gatherings....  
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