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squirmingitch last won the day on September 16 2019

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About squirmingitch

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    "If there are no dogs in Heaven, then when I die I want to go where they went." ~~~ Will Rogers
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  1. I agree with Cyclinglady.

    Furthermore, we are all individuals so don't go by what you think others have for symptoms. We don't ALL have the same exact symptoms. I got nausea in the latter years but did not throw up. I have dermatitus herpitiformis (the celiac rash) & had "D" only about every 6 weeks, not all the time or even what I would call frequently. Never had constipation. My hubs had alternating "D" & constipation. See? We're all different & our symptoms vary AND they can change over time as one continues to eat gluten unaware that gluten is the problem. Then the symptoms can intensify and new symptoms add to the old ones.

    I will say one thing that may help you with the constipation for now. You can try it & see if it helps since you have to keep eating gluten until all testing is done. First thing in the morning put a tablespoon of lemon juice in warm or hot water (you can add a little sugar to make it palatable) & drink it. Follow that with a tablespoon of coconut oil. Don't expect results the very first day but in 4 or 5 days you should see results. You should start eliminating every morning like clockwork. 

  2. Be advised that if you decide to do celiac testing you MUST be eating a gluten diet. If you have gone off of gluten or even gone "gluten light" then you will have to do a gluten challenge for testing. Here is what a gluten challenge requires:


    If you are indeed a celiac, you should know that going gluten free as a test bears repercussions when it comes to doing a gluten challenge for testing. We have much stronger reactions to gluten when we go back on it for testing. Many have such intense reactions that they simply can not complete the gluten challenge and therefore never get the diagnosis. Just food for thought.

    BTW, like Gemini, I too am a short, thin celiac. 5'2" and presently trying like hell to get back to my 103 weight but keep hanging up at under 100. At my lowest point pre diagnosis, I was 91 lbs. A walking popsicle stick.

    Ha Gemini, I too despise the word skinny! It's an insult. And I swear if one more person told me to go eat some cake I might have slapped them. I could out eat men who were 5 times my size but it didn't do a bit of good.

    I would also like to mention that a test run for celiac by going gluten free really needs to be at least 6 months long if not a year. The first 6 months to a year can be a real roller coaster for celiacs. Up & down & up & down. Some days or weeks feeling great and then BOOM! the bottom drops out & you feel like total crap. It takes time for our guts to heal and until that happens we don't feel consistently "normal".

  3. 1 hour ago, Tobysmom said:

    I am trying a gluten free diet for my son, due to behavior problems in school. I grew up eating blue runner red beans and my don loves them. Does anyone know if they are gluten free?

    I am not familiar with the blue runner brand but I do know that Bush's beans are gluten free -- all of their beans are.



  4. 12 minutes ago, I'm a glutant said:

    I've been cleaning their faces with a wipe, at the party right after they eat -- but I haven't done a more thorough face wash with soap once we get home.  Come to think of it, maybe they just both need to go straight to the bath whenever we first get home, instead of waiting until almost bedtime!  I've changed their clothes right away, but maybe that's not enough.

    That might be a good idea. I don't think a wipe will get the gluten off or not all of the gluten off anyway. I agree with Raven about the hair as well. And then there is the neck and the arms. Yep, a bath might be the best course of all.

  5. Aw, you're so welcome. I just wish this hadn't happened to you. Before I forget...... NEVER say you don't belong here without a celiac diagnosis. UNTRUE!!! this site is also for NCGS as well AND there are plenty of people on here who had circumstances very much like yours where they got screwed up by bad information from the docs and couldn't get a diagnosis. Self diagnosis exists. 

    The thing is that a blood test wouldn't have done you any good because for that you would have had to have been eating gluten for 12 weeks in order for the antibodies to build up to a measureable level. I believe the reason your doc said you have celiac & then rescinded it is because the antibodies didn't show up in the pathology because he only had you eat gluten for 1 week instead of two. From what it sounds like, the damage showed up loud & clear. If those photos showed smooth intestines then any fool should be able to realize what happened to you.  So this is what I'm thinking..... get your records, ALL of them. then find a truly celiac savvy doc & take those records to him/her along with notes you take now of your reaction since going back on gluten and the recovery time from that. Make sure to explain that the doc only had you eat gluten for 1 week prior to the biopsy. You may at least walk out with a diagnosis of NCGS which will afford you some measure of protection and validation.

    If I were you, I would consider myself celiac. I'm just saying....

  6. You are welcome!

    You might want to check out this section:


    Look through threads on there, maybe especially going back around 2011-2013. There is a lot of great information on there about kids & figuring out all the things that are going on with them. Some very knowledgeable people on there too who have been through the ropes with their own kids. 

  7. She has to be eating gluten for 2 weeks before an endoscopic biopsy for celiac disease. I'm sure that's why the doc is wanting her eating a few gluten crackers per day.


    To do the blood work she would have to eat gluten for 12 weeks. I would guess the doc intends to scope & while he's in there, he will do biopsies for celiac. That would be much less painful than putting her through 12 weeks of eating gluten in order to do blood tests. Besides the endoscopy is the "gold standard" for diagnosis. Also, children her age can be tricky where the blood work is concerned. I understand the frequency of false negatives is quite a bit higher than with adults. 

  8. 1 hour ago, tracym007 said:

    Hello everyone. I am posting in hopes that someone has went through my experience and help me figure out if I may be gluten intolerant. Last summer I developed a small rash on my lower left leg on the front. It was a little itchy but I didn't think much of it. I wasn't sure what it was because I am immune to poison ivy. Anyway, it spread on my leg and developed in other areas too- my elbows, right leg, waist (front and back) and became intensely itchy. The itch was so bad that I couldn't help scratch until I bled sometimes. The rash on both legs ended up spreading around both bottom legs to front and back (about 3/4 of bottom leg was covered) and sometimes my legs would swell where the rash was.  I went to numerous doctors, including dermatologists and allergists. The dermatologist diagnosed it as eczema and I was given topical steroid creams, steroid injections, and antibiotics (because some spots looked infected I'm sure from the constant itching). The itching would stop and the rash would start to clear up. But before long (I believe when the steroid injections wore off) the rash would come back and start intensely itching again. I went through this 3 times before the allergist decided to do a biopsy which wasn't conclusive for anything unfortunately. I was so frustrated and through research and talking to a friend of mine who's mom has celiac disease, I asked my doctor to run a celiac blood panel. I was shocked when it came back negative. I was so sure that it had to be because of the gluten. As I read more however I am thinking it maybe could be a gluten intolerance and of course there is no sure test for this. So I am slowly weeding gluten from my diet to see what happens. It's difficult especially since I'm not a big fruit and veggie lover. I also have some other symptoms that I didn't even know were related until I started doing heavy-duty research. I was diagnosed with depression in 2008 and I also have periods of "brain-fog" where I feel like I can't concentrate or think clearly. Also on occasion I have some gut pains and feel bloated. What I am looking for on here I guess is some validation that someone else has experienced the whole rash thing and encouragement as I make the switch to gluten-free living. Thanks!

    Read this thread & also threads on the dermatitis herpetiformis section.


  9. katelyann, it doesn't matter if your hives are dh. You have celiac disease, no need to be dx'd with dh. You just have to be super careful not to get cross contaminated. Since your gluten exposure was assumedly only once last week then your biopsies will turn up negative for dh IF the derm took them correctly. You would have had to be eating gluten for a while for the biopsies to come up positive. You ought to take a look at hives & dh & compare because they are completely different things.

  10. Yes, you have to be eating gluten for the skin biopsy the same as you do for the blood panel.

    Read this:


    "Many people with DH have no digestive symptoms and only about 40% of them have the positive blood tests (serology) for celiac disease. However, they almost always have the same, gluten-dependent intestinal damage as those with the more common symptoms of celiac disease."



    A biopsy is done on a clear spot NEXT to an active lesion NOT ON one.




  11. Oh honey, I'm soooo very sorry all this has happened to you. The doctor is an ass, plain & simple. You don't get villi damage from non celiac gluten sensitivity -- you can get all the other symptoms but NCGS does not damage the villi. I would bet everything I own that you are celiac. You've just gotten a doc who doesn't know what the hell he's talking about. Worse yet, he's left you with NO diagnosis & confused the crap out of you. With the symptoms you're having you can't eat gluten again -- it's way too dangerous for you. You can't ever do a gluten challenge again. BTW, you were supposed to eat gluten for TWO weeks for the endoscopy not the ONE week he told you to. See? Another example that he doesn't know what he's doing when it comes to celiac. Never mind because you wouldn't have been able to do it. It sounds like you would have ended up in the hospital.

    Get your records. I bet the pathology on those biopsies will make things clear. You can post that here if you wish -- we have members who are really good at interpreting those things.

    I am very sorry to tell you that you're just going to have to ride this out. It WILL get better, I promise but there is no magic pill to make it all go away. Drink lots of water & rest as much as possible. If you don't absolutely have to do something, then don't do it - just rest. The symptoms you are experiencing are typical of celiac. We tend to get MUCH stronger reactions after we have been gluten free & that's exactly what happened to you. You were gluten free & then went back on gluten for the endoscopy & your body went haywire. These damn doctors who tell people to try going gluten free & see how they feel just screw people up so bad! Then when the person goes back on gluten to get tested, they get sick as all hell.

    Please go to the coping section & read the Newbie 101. I know you've been gluten free before but we want to make sure you don't get cross contaminated because it sure sounds like you won't be able to take it if you do.


  12. nacoconut,

    Apparently there are many options for the endoscopy procedure & you can do it without general anesthesia. Many people have gone through it with just a throat numbing spray. I found a few links I thought you might like to read:




  13. You MUST be eating gluten for blood testing. I don't care what your doc says. If you don't keep eating gluten until the blood is drawn then you can get a false negative. It's happened countless times!!!!! 

    An allergy specialist will do you no good in dx'ing celiac disease. Better to go to the GI. It may be possible to do the endoscopy under heavy sedation but not anesthesia but I'm not sure. I have a friend who did a colonoscopy where she watched it on the monitor so she was awake enough to do that.  You will have to discuss that with the GI. If you can work something out with the GI so you will have the endoscopy then you will need to continue eating gluten until the endoscopy is completed.

  14. In order to test you for celiac disease you would have to do what's called a gluten challenge which requires eating gluten. See:


    So bottom line ~~~ you can either do the challenge & get tested or you can go very strict gluten free. From what you wrote I would bet you are a celiac and that would mean you need to be very careful about not getting cross contaminated. 

    Read this and follow all the links contained in the threads.



  15. It's possible. However, it's also possible it's a temporary "feel good". The first 6 months - even a year - can be rather roller coaster like. Some days/weeks great & then boom, the bottom seems to drop out. Just try to go with the flow, keep your diet clean, drink lots of water & try to keep the stress level down. Let's hope you are one of the lucky ones who just keeps feeling better & better from here on out. There are people who experience that so don't let me get you down with what I've said. I just want you to be aware.