Hang in there! The waiting is so hard, but it will be over soon.
greenbeanieMember Since 10 May 2013
Offline Last Active Nov 22 2014 04:25 AM
Posted by greenbeanie on 13 November 2014 - 02:24 AM
My daughter (age 4 at the time) was positive on all three blood tests they ran (tTG-IgA and both DGP tests), and she had a positive biopsy but the damage wasn't visible during the endoscopy itself. And it was only the biopsies of her duodenal bulb that showed damaged villi. Her doctor was very surprised that the biopsies didn't show more damage throughout, given her high blood tests and tons of symptoms. But it was enough to confirm the diagnosis. When they told me everything looked normal on the day of the endoscopy, I worried that we'd be left with no clear diagnosis - but we did get one once the biopsies came back.
Hang in there! The waiting is so hard, but it will be over soon.
Posted by greenbeanie on 05 November 2014 - 03:30 PM
Welcome to the forum, kcrawford! I just want to echo what others here are saying - though it's really hard to keep feeding a kid a food that seems to make him sick, he needs to keep eating gluten if there is any chance of doing an endoscopy. It may be much, much harder to put him back on it for testing in the future, so it's definitely better to get everything done before changing his diet permanently.
Did you have the DGP-IgA and DGP-IgG tests run as well as the tTG tests? They are sometimes more accurate in very young children.
We were fortunate that my daughter got a clear celiac diagnosis at age 4, after problems essentially since birth, and having a clear diagnosis made our lives immensely easier. Not only did we finally have a solution to the problems we'd been guessing at for years (which was a huge psychological benefit after so much uncertainty), but having the official diagnosis helped her school and other family members take it seriously. Even with a clear celiac diagnosis, it's hard to get people to realize that even a tiny amount of cross-contamination can be a problem - and having medical documentation to back up the need for that degree of vigilance is really helpful.
It sounds like your little guy might benefit from a gluten-free diet regardless of whether he has celiac or non-celiac gluten intolerance, and I'd definitely encourage you to give the gluten-free diet a good long try once all testing is complete, regardless of test results. But before doing that, seeing a GI doctor (while he is still on gluten) is definitely preferable. Other types of doctors often don't know enough about celiac to even order the right blood tests, even when they are very competant in other areas. We had to go to three different pediatricians before one would even agree to order the celiac panel for my daughter - the first two had the common misconception that all children with celiac are short, whereas my daughter has always been tall for her age - and even once we found a sympathetic doctor and my daughter's blood tests all came back with high positives, he still gave us bad advice. He told us to take her off gluten immediately, even before seeing a GI doctor or doing an endoscopy. Fortunately, I knew from the helpful advice of people on this forum that I should keep her on gluten until the endoscopy was done. That turned out to be crucial for getting confirmation from the endoscopy that gluten really was the problem.
Posted by greenbeanie on 31 July 2014 - 11:04 AM
My daughter's belly looked like that at that age (still before her diagnosis) - sometimes a bit bigger, sometimes a bit smaller. It varied a lot from day to day. Now that she's been gluten free for just over a year, it still swells up a bit when she has too much dairy, but not nearly as much as it swelled up before.
Posted by greenbeanie on 08 July 2014 - 06:27 PM
Thanks for the info, Lisa. My daughter has no other tests to compare to, but after that she started taking an adult dose of chewable Caltrate every day (which has 800IU of D3) on the recommendation of the dietitian at her GI's office, mainly for the calcium. My level was retested by a different doctor about six months after the first test and had risen significantly, though I forget the exact number now and the lab had a different reference range. I'd been supplementing with 4000IU per day in between and was feeling much better, so I stopped taking it regularly. I was never really clear on what level to aim for.
Posted by greenbeanie on 25 June 2014 - 09:35 AM
Has your magnesium level been checked? I had this kind of internal shaky feeling, and also hand cramps, for years. Another forum member recommended magnesium, and it made all the difference in the world. Come to find out, a blood test from when I was in the hospital years ago had showed magnesium deficiency, and the doctor hadn't even told me about it. I only found out because I requested copies of my all my old lab records because I was trying to figure other stuff out. After six months of supplements my level was back into the normal range, and I cut the supplements back to every few days instead of daily. Whenever I try to stop it totally, though, the shaky feeling comes back in less than a week.
Edited to add: Oh, I see that this was your first post. Welcome to the forum!
Posted by greenbeanie on 28 May 2014 - 06:05 AM
We use Food For Life brown rice tortilla wraps, which our local mainstream grocery store has by the gluten-free bread in the freezer section. They taste good but are kind of stiff.
I would love to find a good corn tortilla wrap that's not made on shared equipment with wheat, but no luck so far. Our store carries six different brands of corn tortillas, and every single one of them is made on shared equipment. I've heard that the Mission corn tortillas are good, and their website says the corn ones are made on separate lines from the wheat ones and that they have allergen controls in place, but I can't find them in any stores near us.
Posted by greenbeanie on 11 April 2014 - 04:12 PM
Finally got it! Phew. (No, I haven't been playing every day all this time....but I did play quite often, and it was driving me crazy that I kept coming so close and then getting stuck.) Now I need a new diversion...
Posted by greenbeanie on 08 April 2014 - 02:33 PM
My daughter had her endoscopy just after turning 4, and it went totally smoothly. The nurses were wonderful and even gave her stuffed animal a gas mask and band-aid, and tucked him under a blanket too. I'd highly recommend bringing a favorite toy! I was nervous about the anesthesia too, but it was fine. They sedated her with gas before putting the IV in, so that wasn't traumatic. They also drew blood for more lab work while she was asleep. I was able to go into the procedure room with her and hold her hand until she fell asleep, and they called me into the recovery area before she woke up again.
The only other thing I wish we'd known beforehand is that the procedure room was very noisy, with banging equipment and lots of nurses and assistants all chatting. My daughter was a bit freaked out by all the sudden noise (the prep area had been quiet), and I hadn't realized there'd be so many people in the room. There were at least five or six people there, in addition to us. But otherwise it was really an easy process, and my daughter was thrilled that she got a ride to the hospital door in a wheelchair after! I think it's a lot more stressful for the parents than for the kids.
Posted by greenbeanie on 21 March 2014 - 10:45 AM
My best so far was 512 in a single square, while also having 256 in another square on the same board at the same time. Things went downhill very quickly after that...
I never would have though it possible, but this game is even more addictive than Tetris. I'm going to be seeing numbers when I try to sleep tonight! Good thing I'm on vacation.
Posted by greenbeanie on 27 February 2014 - 03:35 PM
I'm not sure if this is still the case, since I haven't shopped at Trader Joe's since before the new labeling guidelines were passed. But we had some bad experiences with their "gluten free" store brand stuff previously - as in, stomach pains within minutes of eating their chicken stock and (on a separate day) within minutes of eating one brownie. Both were labeled gluten free. Upon further investigation, I found out that many of their gluten-free products were made on shared equipment with wheat. This was shortly after my daughter's diagnosis, and we have not been back since (or tried any other products made on shared equipment from other sources). Perhaps they've changed their labeling since August, so maybe it's fine now. But definitely read the labels for the "shared equipment" statement even if the package itself is labeled gluten-free. My daughter seems to be super-sensitive, as she also had a very clear reaction to Rice Dream (which is supposedly tested to less than 5ppm). So take this with a grain of salt - maybe other celiacs are ok with the Trader Joe's store brand stuff. But I'd be wary of it, and try it very carefully.
Unfortunately, Whole Foods is much more expensive. But we haven't had any problems with their store brand. I was lucky that my daughter was already used to eating mostly not-typical-kid-foods when she was diagnosed, so we just avoid most cracker-type and bready things altogether. Brown rice crisps and rice cakes have become staples, though. They're widely available at mainstream stores, and relatively cheap.
Good luck! It's hard to navigate at first if you're trying to provide gluten-free substitutes that taste like the wheat version, since many gluten-free grain products taste quite different, and kids are bound to notice. It was much easier for us to just switch to different types of naturally gluten-free snacks that my daughter wasn't used to having before - so it was more like a new experience altogether, rather than a substitute for a previously-loved food.
Posted by greenbeanie on 31 December 2013 - 04:29 AM
Have you tried reducing sulfites in your diet? I have also reacted to most of the foods you mentioned, with worsening symptoms for decades. My daughter has celiac and I had so many autoimmune symptoms that both my GI doctor and I were shocked that my celiac tests came back negative. I've been gluten free for six months now and I feel better than I ever have in my life, with 30 years of rashes and 20 years of diarrhea gone, plus balance and coordination problems (which I'd been hospitalized for before) improving greatly. However, I still have clear allergic-type reactions to virtually all sauces and condiments, salad dressings, anything containing even a tiny amount of vinegar, chocolate, onions and garlic, most alcohol, dried fruit, and mashed potatoes at restaurants. I've had several doctors look at this long list of foods and tell me they have nothing in common, until recently an allergist noticed that they're all high in sulfites! It was a total revelation. I eat very little processed food, and I'd known sulfites were preservatives but had dismissed the possibility that sulfites were the problem before because I didn't realize that they occurred naturally in vinegars, onions, and garlic - which explains why I was reacting to homemade soups and salad dressings too. It also explains why I have trouble with restaurant mashed potatoes, where sulfites are often added to preserve their color, whereas mashed potatoes I make at home are fine. And it explains why I can eat dark raisins with no problem but get sick from other dried fruits...and the list goes on. Anyhow, if I totally avoid all foods high in sulfites PLUS anything with gluten, I have no symptoms at all! It does lead to a very restrictive diet, though, since there are small amounts of onion, garlic, and vinegar in so many foods. I pretty much avoid anything with "natural flavorings" even if those flavorings are gluten free.
Avoiding sulfites for a week or two might be worth a try if this sounds familiar. I thought for a while that I must be reacting to gluten cc, and I am very sensitive to that too (I've invariably been able to trace episodes of balance problems and night sweats back to something I ate that was processed on shared equipment with wheat), but for me the sulfite issue was a separate problem. My reaction to sulfites is different - coughing, runny nose, then steatorrhea. My allergist said there's no reliable test for sulfite sensitivity, and it's not necessarily a true allergy, but it feels just as bad. There is a known connection between sulfite sensitivity and asthma, but I don't have asthma, so go figure. Anyhow, reducing naturally-occurring sulfites in addition to eliminating gluten has been wonderful (though very inconvenient). I'm hoping I can add some onions and garlic back in after a while, though - I sure do miss the flavor!
Posted by greenbeanie on 26 November 2013 - 11:41 AM
I would also suggest going 100% gluten free regardless of your test results. I know that can be hard without a clear diagnosis, but for me it has made all the difference in the world to be totally strict about the diet all the time. I had been gluten-light for years and had many of the problems you mention, but my celiac tests were negative after a miserable gluten challenge. However, they only took four samples and did not take any from the duodenal bulb or do lymphocyte counts, which were the two things that my daughter's biopsy-confirmed celiac diagnosis was based on (if they'd tested her the same way they tested me, she would have gotten false negative results). I really don't know whether I have celiac with patchy damage that the biopsy missed, or non-celiac gluten intolerance. But either way, being gluten free has made such a tremendous difference that there's no way I'd go back! Going from a "gluten light" diet to a totally gluten-free diet had a much bigger effect on me than going from eating gluten daily to only eating it once or twice a week. Getting rid of that last little bit had a disproportionate effect!
I hope you get clear test results so that your decision is easy.
Posted by greenbeanie on 24 September 2013 - 10:19 AM
I am so sorry you've had to go through that. Your frustration at doctors must be immense, and understandably so!
I am also in perpetual limbo with no official diagnosis, and I have been struggling for months to come to terms with that. After decades with dozens of unexplained, worsening problems (I'll spare you the details), I've had more doctors than I can count dismiss my concerns over and over. When I finally learned about celiac and recognized that it fit all my symptoms, I was so relieved to think I'd finally have a diagnosis that would make doctors finally take me seriously - especially the ataxia and neurological symptoms, which were scariest for me. But I'd avoided wheat for so many years (because I knew it made me feel sick even though I had no idea why) that I had to do a gluten challenge before testing, and my results still came back negative. Everything flared up terribly during the challenge, and now the doctors have taken my negative results as proof that it was all in my head from the start. Ironically, they also take the fact that I've had amazing improvements in the last few months gluten-free (including objectively-measurable improvements like a positive ANA turning negative and monocytes falling within the normal range after being high for 15 years) as further evidence that there was never any real problem to start with! Their official conclusion is that I don't have any physical problem with gluten, but I should never eat it again since it seems to cause me so much distress that the worry about it gives me diarrhea and rashes, makes my hair fall out and my tongue swell, causes night sweats, and makes me fall down stairs and smack into doorframes. What kind of diagnosis is that? I know that gluten caused my problems, and that it's not in my head. It's just so hard when no one else believes it.
At some point, I know I need to stop being angry at doctors and just be happy that my body is finally healing now that I'm gluten-free. I was very fortunate, at least, to finally find a doctor who agreed to test my daughter for celiac, and she tested positive across the broad and is absolutely thriving since her diagnosis. And after three months gluten-free, I can now go days at a time without tripping over anything!
I didn't intend to write such a long-winded reply...My main point is that I'm glad you've found this forum, and I hope that your symptoms improve steadily. If no one will give you an official diagnosis but you know that you feel better gluten-free, that really is the most important thing. (I'm still trying to convince myself of that - I know it's true intellectually but still don't feel that way...)
Posted by greenbeanie on 09 July 2013 - 04:55 PM
So sorry you are going through this. Has she been tested for celiac? If she hasn't been tested yet and you plan to, she'll need to be eating gluten until all testing is complete. It may be really hard to put her back on gluten for testing if she ends up responding well to the gluten-free diet, so if you think an official diagnosis might matter for school (in the future), etc., you might want to consider it now.
My daughter was just diagnosed with celiac at age 4, and her behavior was just like you describe - constantly fussy since birth, extremely clingy and whiny despite very consistent parenting and a wonderfully supportive daycare, etc. We could just never make her happy, no matter what we did. She had digestive issues since birth too, but the behavioral and neurological/sensory problems were really our main challenge early on. She started having daily tantrums before age 1, and by the time she was 3 she was routinely having 10-12 horrible tantrums almost every day. Her sleep was also so bad that she was sent to a neurologist at one point because they were concerned that all the thrashing around and crying every 45 minutes in her sleep might be seizures. We were completely exhausted, and everyone keep looking at us like we, as parents, were somehow causing this. Her tantrums were never for ordinary things like wanting toys or treats - they were triggered by the tiniest itch, sudden noises (even if they weren't loud), bright lights, and things like that. She was diagnosed with sensory integration disorder at 3 1/2, and it was kind of helpful to have a name for it, but it took until recently to get to the root of the problem. She was just diagnosed with celiac a few weeks ago, and she's suddenly turned into a sweet, loving, usually-calm child! The transformation really was amazing. And the sensory problems are almost gone already.
Whether or not you decide to pursue celiac testing, I'd urge you to give a strict gluten-free diet a good long try for at least several months (once testing is complete, if you go that route). Having gluten withdrawal symptoms for a few weeks seems to be normal, so a lack of immediate changes doesn't necessarily mean it's not helping. My daughter's first five days were pretty rough, but after that we saw a clear and fairly steady improvement. We did discover that she is sensitive to the barley enzymes used in the supposedly gluten-free Rice Dream that she was drinking every day, so we had to cut that out too. She also reacts to many brands of processed gluten-free foods, so we've had to stick to almost all fresh or homemade foods for now. Being constantly vigilant about cross-contamination in everything is tiring, to be honest, but it's so worth it to have a happy child!
I hope things improve for you soon, whether gluten is causing your daughter's problems or it's something else. As parents, we really do know our children best, and it's especially hard if doctors and others keep brushing aside extreme fussiness and clinginess as a behavioral problem when there really is an underlying reason that the child's in pain all the time.
Posted by greenbeanie on 09 July 2013 - 02:59 AM
I'd go for the tests now, or next time she's having blood drawn for any other purpose, as long as the doctor is willing to re-test her periodically even if the results are negative. You certainly might get a false negative at that age, but you also might get a positive - and if you do, it would be really great to catch it sooner rather than later! Especially with your older children having celiac, it seems like the doctors should be willing to test frequently.
My daughter was born 5 weeks early and had serious birth complications, though fortunately she stabilized pretty quickly and was released from the hospital in a week. She also had extreme fussiness that doctors keep saying was colic until it lasted well over six months, and she had obvious problems with my breast milk when I was exclusively breast feeding. An allergist and pediatric GI eventually had us try Alimentum formula (hypo-allergenic but still milk-based), and when she couldn't tolerate that we put her on Neocate, which was like magic. She thrived on Neocate and we introduced solids late, but her problems returned and gradually grew worse once she started eating table foods. Her problems as an infant and young toddler were mostly neurological/sensory/behavioral; the clear intestinal symptoms didn't develop until she was around 2. At age 4, she was diagnosed with celiac. All three of her blood tests were clear positives, and the biopsy confirmed it, even though she really wasn't eating that much wheat. Of course I can't know this for sure, but I strongly suspect that she would have tested positive at a much younger age if anyone had ordered the tests, and the last few years would have been much better for all of us if we'd known sooner.
As long as your doctors are aware that false negatives are likely in toddlers - and it sounds like they do recognize this - I can't see what harm it would do to test now (and then repeat in a year or so if it's negative). Good luck!
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