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Nadia2009

What Are Your First Symptoms When You Get Glutened

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Gluten must make me sleepy tired and makes me yawning non-stop. I have hard time moving and doing things and I feel the need to sit or lie down to breathe easily. The other day I knew I was glutened because I walked with difficulty worrying about reaching home and it was a 5 min walk that I do twice every day. I also kept sleeping took frequent naps during that week. Two days after my difficult walk I knew I came back normal my head was lighter my breathing easier and my body stronger.

Is there anything we can do to make the symptoms go away faster after consuming some gluten?

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Gluten must make me sleepy tired and makes me yawning non-stop. I have hard time moving and doing things and I feel the need to sit or lie down to breathe easily. The other day I knew I was glutened because I walked with difficulty worrying about reaching home and it was a 5 min walk that I do twice every day. I also kept sleeping took frequent naps during that week. Two days after my difficult walk I knew I came back normal my head was lighter my breathing easier and my body stronger.

Is there anything we can do to make the symptoms go away faster after consuming some gluten?

I start to feel really tired and then about 2 hours later I get really bad stomach pains and D. Afterwards it depends on how badly I was glutened. When it must have been a tiny amount because I can't work out what happened, I'm usually ok if I have an early night. The time with the frying oil I was sick for hours with D, managed to fall asleep on my tiny sofa for 3 hours and then another 12 in bed and I was still wrecked the next day. I'm still unsure about other symptoms - in the 3 months I've been gluten free I've been able to keep very close control over my food.

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I get extremely sleepy also, it feels like you've been drugged (i supposed 'poisoned' would work though, lol). One of the things I notice right away is a migraine. I shut myself away in a dark quiet room with a cushy pillow and ride out the worst of it. It also seems to affect my vision. It's a lot harder for things to come into focus, I have to squint a lot in order to see things clearly.

Then the stomach cramps come (obviously the worse the glutening, the more severe the pain). Then my stomach gets really distended, 6 months pregnant looking. My lower abdomen becomes super round and hard. If I touch my stomach it will leave a hand print (it's really creepy). It happened the other day unfortunately, but I did get the chance to show my family how REAL celiac is, and what gluten does to me. So it's nice that they take me more seriously now. After awhile my bones will start to ache all over also. My symptoms will usually last a couple days to a week.

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I hate that but I just lost my first reply to you Anaba.

I got glutened again and this time it is much worst with stomach pain and D. I also feel weakness in my hand and dont know if it is a coincidence I dropped things around when it was starting on Tuesday.

The worst is the shortness of breath. That used to be my biggest issue in the spring 2009 when I overwhelmed my doctor with all sorts of symptoms. Also my sinusis are clogged but that could just be the amount of dairy I have been taking lately and my cold.

Sorry for not answering specifically to each of you but I dont feel well. Will come back another time.

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My father gets a little tired the next day and the big D for a day or two.

My daughter has intense stomach pain/nausea and feels very shaky and has difficulty walking because her muscles feel so weak, for about 2-3 hours. Then feels more tired than usual and off and on shakiness and nausea for a day or two.

I have a sudden attack of vertigo that makes it difficult to stand up or move quickly without falling over, nausea and vomiting, for a few hours. The dizziness lasts a few days, sometimes stomach pain or the runs, I think, and definitely more sleepy and tired for a few days.

The breathing...have you ever been tested for a gluten allergy along with the celiac disease? Might be worth doing, just in case you are having two reactions at the same time, you know?

So far, I haven't found anything that's helped my symptoms go away faster, sadly. :-(

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About your drugged up feeling - I get a weird feeling like my muscles are super weak, along with the GI symptoms. It's really odd :D This has got to be one of the strangest damn diseases anyone can have :D

I'm finding my "intolerances" affect me worse GI wise, and gluten is causing more of the neural/DH outbreak/panic/anxiety problems. So often my first symptom is only a day or two later with tearfulness, depression and anxiety.

*Sometimes* I get a sore stomach/nausea after accidental exposure, but just because I don't get that feeling, doesn't mean the food was "safe" - so don't make that assumption :)

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The allergy testing would be for wheat and barley and it would be a good idea given your breathing issues. People can have both celiac disease and wheat and/or barley allergy.

I don't doubt that gluten can cause fatigue and sleepyness, but blood sugar imbalance can also cause those symptoms and again, many of us have both. I get fatigue/sleepyness from both but I've learned to distinguish the difference.

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I start to feel really tired and then about 2 hours later I get really bad stomach pains and D. Afterwards it depends on how badly I was glutened. When it must have been a tiny amount because I can't work out what happened, I'm usually ok if I have an early night. The time with the frying oil I was sick for hours with D, managed to fall asleep on my tiny sofa for 3 hours and then another 12 in bed and I was still wrecked the next day. I'm still unsure about other symptoms - in the 3 months I've been gluten free I've been able to keep very close control over my food.

So you have GI symptoms and tiredness sleepiness. For me, my GI symptoms are more noticeable now after a year being gluten free. I have stomach cramps and about 3-4 BM. But these bother me less than shortness of breath, palpitations and mood shifts. Congratulations on your 3 first months being gluten free.

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I get extremely sleepy also, it feels like you've been drugged (i supposed 'poisoned' would work though, lol). One of the things I notice right away is a migraine. I shut myself away in a dark quiet room with a cushy pillow and ride out the worst of it. It also seems to affect my vision. It's a lot harder for things to come into focus, I have to squint a lot in order to see things clearly.

Then the stomach cramps come (obviously the worse the glutening, the more severe the pain). Then my stomach gets really distended, 6 months pregnant looking. My lower abdomen becomes super round and hard. If I touch my stomach it will leave a hand print (it's really creepy). It happened the other day unfortunately, but I did get the chance to show my family how REAL celiac is, and what gluten does to me. So it's nice that they take me more seriously now. After awhile my bones will start to ache all over also. My symptoms will usually last a couple days to a week.

I have bloating but it is not as bad. I only realize it once it is gone and I dont see my belly anymore.

Your family will get used to your medical condition with time. My relatives don't take me seriously either but I am used to that. I have been criticized for how I focus on my health and got no support when I was searching for what was wrong with me but without my persistence, I wouldn't have learned about gluten intolerance. In early 2009, I didn't know gluten intolerance even existed...never heard of anyone with that condition. And I was checking a youtube video on how natural ways to heal tooth cavities when I learned wheat is the reason why we develop tooth cavities at young ages etc. From wheat to gluten, I educated myself on conditions no one in my family has ever heard of. It is even more interesting how every day, I see celiac profiles in my family but will they ever be tested and listen to me. I dont know.

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My father gets a little tired the next day and the big D for a day or two.

My daughter has intense stomach pain/nausea and feels very shaky and has difficulty walking because her muscles feel so weak, for about 2-3 hours. Then feels more tired than usual and off and on shakiness and nausea for a day or two.

I have a sudden attack of vertigo that makes it difficult to stand up or move quickly without falling over, nausea and vomiting, for a few hours. The dizziness lasts a few days, sometimes stomach pain or the runs, I think, and definitely more sleepy and tired for a few days.

The breathing...have you ever been tested for a gluten allergy along with the celiac disease? Might be worth doing, just in case you are having two reactions at the same time, you know?

So far, I haven't found anything that's helped my symptoms go away faster, sadly. :-(

You have a strong reaction to gluten here. May I ask if you are full celiac or if you are just gluten intolerant? I get shakiness and muscle weakness like your daughter but I hate the shortness of breath and palpitations.

I have tested for wheat allergy and in total I had 4 skin test in about 10 years and 2 were from last year. One of the doctors explained to me that an allergy is a sudden reaction so I dont have an allergy to wheat. But I dont know how accurate is skin testing because I didnt show a reaction to honey but a half teaspoon gives me shivering and stomach ache and D and that's in the following minutes.

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About your drugged up feeling - I get a weird feeling like my muscles are super weak, along with the GI symptoms. It's really odd :D This has got to be one of the strangest damn diseases anyone can have :D

I'm finding my "intolerances" affect me worse GI wise, and gluten is causing more of the neural/DH outbreak/panic/anxiety problems. So often my first symptom is only a day or two later with tearfulness, depression and anxiety.

*Sometimes* I get a sore stomach/nausea after accidental exposure, but just because I don't get that feeling, doesn't mean the food was "safe" - so don't make that assumption :)

I agree this is a strange disease just by checking the weird symptoms and their variety. For me, gluten must trigger panic attacks and that's how I explain my shortness of breath, palpitation and chest pain. I am also realizing I can drink coffee if I just stay away from gluten.

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The allergy testing would be for wheat and barley and it would be a good idea given your breathing issues. People can have both celiac disease and wheat and/or barley allergy.

I don't doubt that gluten can cause fatigue and sleepyness, but blood sugar imbalance can also cause those symptoms and again, many of us have both. I get fatigue/sleepyness from both but I've learned to distinguish the difference.

My skin allergy testing didn't show any food wheat allergy and I don't know if barley was in the list but the Western diet doesn't have much barley so if I am allergic it should be to wheat. I have panic attacks though and I haven't had them for many years but they showed up in 2009 along with other issues. I am starting to think my anxiety attacks are not due to mineral imbalances as I was told before but triggered by gluten and stress together.

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You have a strong reaction to gluten here. May I ask if you are full celiac or if you are just gluten intolerant? I get shakiness and muscle weakness like your daughter but I hate the shortness of breath and palpitations.

I was diagnosed with celiac disease, via blood test and biopsy, both.

You know, if might be worth it to get tested again for a wheat allergy, if you find a good allergist. The one I just spoke to was hired by his practice as someone who was up to date on the latest information on allergies, and he was saying they are learning more and more about allergic reactions that are delayed by hours or even days. Don't know a lot yet, he said, but learning more. So while they used to think the reaction had to be immediate, the ones who are up to date on the latest research are no longer saying that.

I don't know how many allergist bother to keep up to date, though. My first allergist didn't say a word, you know?

But...my GI doc mentioned that many of his celiac patients have minor heart problems. Have you ever been tested for a heart murmur or something else that might be complicating the palpitations? I really trust this doc. He's the same one who said: we'll send your allergy tests to the dietician, and then you tell her any reactions you notice to foods, because tests can't tell us everything.

I have a feeling he'd have been telling you to stay away from honey. ;)

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I am a 64 year old retired airline pilot. I decided to retire early when I found myself constantly falling asleep, sometimes while flying the airplane. After I retired, I decided to try to find out what the problem was. Believe it or not, it was Jennifer Esposito's interview on television that led me to the discovery that I was a Celiac. I couldn't believe that I had been having the very same symptoms she was describing most of my life. (Even in my 20's, I would constantly nap-I thought it was was the hours I was working!)

 

Let me get to my point. Sleepiness and fatigue is very much a symptom of Celiac disease. It is absolutely amazing how little the medical profession knows about this disease. Luckily our children and grandchildren are finally going to benefit from the education that is emanating from current, ongoing studies. What they are learning is that damage to the small intestine creates an unbelievably large number of symptoms because it not only depends on how damaged they are, but what and how much you are eating. Once your intestines become hyperpermeable (long term undiagnosed Celiac) , you body's bloodstream is being injected with all sorts of "foreign" bodies that are not supposed to be in the blood. In the future, I suspect they are going to find that it is not only Celiac disease that can damage the intestinal lining,  but a whole array of foods, medicines and/or chemicals. (One example: a long term user of Aspirin)


My last comment is to mention something (over the counter) that has helped me when accidentally injesting gluten. (It really works for me-the sudden onset of sleepiness disappears in about 30 minutes after popping one.) It appears the secret is DPP-IV. Check out the studies at the National Institutes of Health.) Here is the link if you're interested:

http://www.amazon.com/gp/product/B003O1TZHQ/ref=oh_details_o00_s00_i00?ie=UTF8&psc=1

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Hmmm.....

My son, so far, has been glutened twice. Both times he was weepy. Just a giant ball of weepiness. :( Followed by an attitude suitable for a 15 year old! Along with that, the first time he was constantly in the bathroom all morning (the next day) but the second time it was just the emotional roller coaster. Though, the amounts of gluten eaten were different. 1st time he was eating crackers with the neighbor kid *sigh* and the second time his sister took him to Taco Bell. :/

 

Me (not diagnosed and came up negative on the blood test but went gluten free with the little guy) I get a flare of of the pain in my ribs that I've had since being pregnant with the little guy. It went away when we went gluten free (which I was not expecting at all!) but the 2 times I've eaten gluten containing things that pain flares up so bad! Makes me wonder if it's gluten or if there's something wrong with my gallbladder. Working on figuring that out.

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My initial reactions are always popping ears and flaring sinuses around the ears. This happens within minutes of a good glutening. For a trace amount of gluten, i.e a crumb, or a grain of flour, it might take an hour for the ears to start popping.

 

Once the ears are popping away the floodgates open; weak bladder, headache, distended abdomen, aching joints, clicking ankles, dizzyness, light headed, loose stools, frequent BM, flatulence and fatigue. Those are the physical symptoms which last for upto 10 days - I tend to take apple cider vinegar, neat, in a shot glass as soon as I can. It helps the sinus pain. But I find nothing really helps anything else..

 

The mental problems come in approximately 2 hours after the physical ones have started and these problems are much worse, for me, and last longer. These are; mild depression, dark thoughts, inability to concentrate, no desire to make or hold conversation, unable to plan ahead, introvert behaviour, irritable, moody, tearful, lazy, mental fatigue. Again, nothing seems to help these mental symptoms but a lack of sleep exacerbates them for sure.

 

Good amounts of sleep does speed up recovery I have found, that is, if your sleep pattern is unaffected by gluten!!

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Hi all. My first signs that I was Glutened are, I can feel all my blood rushing from my extremteties to the center of my body. First time I had this -several years ago- I thought I was finting or something, now I know to just get me to a save spot -ie home and bed or something-. Then I can feel the pain coming. My gut will blow up like a balloon and the cramps are unbearable!!!!! this lasts for three to four hours, with or without throwing up.
I read alot of you saying you get the runs......that doesn't happen to me until prob the next day, when the cramps are gone.

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    Sources:
    1. Toft M, Dietrichs E. Aggravated stuttering following subthalamic deep brain stimulation in Parkinson’s disease--two cases. BMC Neurol. 2011 Apr 8;11:44.
    2. Tani T, Sakai Y. Stuttering after right cerebellar infarction: a case study. J Fluency Disord. 2010 Jun;35(2):141-5. Epub 2010 Mar 15.
    3. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    4. Jäncke L, Hänggi J, Steinmetz H. Morphological brain differences between adult stutterers and non-stutterers. BMC Neurol. 2004 Dec 10;4(1):23.
    5. Kell CA, Neumann K, von Kriegstein K, Posenenske C, von Gudenberg AW, Euler H, Giraud AL. How the brain repairs stuttering. Brain. 2009 Oct;132(Pt 10):2747-60. Epub 2009 Aug 26.
    6. Galantucci S, Tartaglia MC, Wilson SM, Henry ML, Filippi M, Agosta F, Dronkers NF, Henry RG, Ogar JM, Miller BL, Gorno-Tempini ML. White matter damage in primary progressive aphasias: a diffusion tensor tractography study. Brain. 2011 Jun 11.
    7. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    8. [No authors listed] Case records of the Massachusetts General Hospital. Weekly clinicopathological exercises. Case 43-1988. A 52-year-old man with persistent watery diarrhea and aphasia. N Engl J Med. 1988 Oct 27;319(17):1139-48
    9. Molteni N, Bardella MT, Baldassarri AR, Bianchi PA. Celiac disease associated with epilepsy and intracranial calcifications: report of two patients. Am J Gastroenterol. 1988 Sep;83(9):992-4.
    10. http://ezinearticles.com/?Food-Allergy-and-Stuttering-Link&id=1235725 
    11. http://www.craig.copperleife.com/health/stuttering_allergies.htm 
    12. https://www.celiac.com/forums/topic/73362-any-help-is-appreciated/
    13. Ford RP. The gluten syndrome: a neurological disease. Med Hypotheses. 2009 Sep;73(3):438-40. Epub 2009 Apr 29.
    14. Hadjivassiliou M, Gibson A, Davies-Jones GA, Lobo AJ, Stephenson TJ, Milford-Ward A. Does cryptic gluten sensitivity play a part in neurological illness? Lancet. 1996 Feb 10;347(8998):369-71.

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    However, researchers really don’t have much data regarding the frequency and significance of clonal T cell receptor (TCR) gene rearrangements (TCR-GRs) in small bowel (SB) biopsies of patients without RCDII. Such data could provide useful comparison information for patients with RCDII, among other things.
    To that end, a research team recently set out to try to get some information about the frequency and importance of clonal T cell receptor (TCR) gene rearrangements (TCR-GRs) in small bowel (SB) biopsies of patients without RCDII. The research team included Shafinaz Hussein, Tatyana Gindin, Stephen M Lagana, Carolina Arguelles-Grande, Suneeta Krishnareddy, Bachir Alobeid, Suzanne K Lewis, Mahesh M Mansukhani, Peter H R Green, and Govind Bhagat.
    They are variously affiliated with the Department of Pathology and Cell Biology, and the Department of Medicine at the Celiac Disease Center, New York Presbyterian Hospital/Columbia University Medical Center, New York, USA. Their team analyzed results of TCR-GR analyses performed on SB biopsies at our institution over a 3-year period, which were obtained from eight active celiac disease, 172 celiac disease on gluten-free diet, 33 RCDI, and three RCDII patients and 14 patients without celiac disease. 
    Clonal TCR-GRs are not infrequent in cases lacking features of RCDII, while PCPs are frequent in all disease phases. TCR-GR results should be assessed in conjunction with immunophenotypic, histological and clinical findings for appropriate diagnosis and classification of RCD.
    The team divided the TCR-GR patterns into clonal, polyclonal and prominent clonal peaks (PCPs), and correlated these patterns with clinical and pathological features. In all, they detected clonal TCR-GR products in biopsies from 67% of patients with RCDII, 17% of patients with RCDI and 6% of patients with gluten-free diet. They found PCPs in all disease phases, but saw no significant difference in the TCR-GR patterns between the non-RCDII disease categories (p=0.39). 
    They also noted a higher frequency of surface CD3(−) IELs in cases with clonal TCR-GR, but the PCP pattern showed no associations with any clinical or pathological feature. 
    Repeat biopsy showed that the clonal or PCP pattern persisted for up to 2 years with no evidence of RCDII. The study indicates that better understanding of clonal T cell receptor gene rearrangements may help researchers improve refractory celiac diagnosis. 
    Source:
    Journal of Clinical Pathologyhttp://dx.doi.org/10.1136/jclinpath-2018-205023

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    • Thanks for the kind thoughts. The test results I got back a few comments ago and I said what they were which was negative on everything. I just don't think it's celiac but something that created this domino affect. I plan on going to my regular doctor because honestly I feel the GI one was useless. When I told her back in Feb that I wasn't sure I'd be able to have the colostomy and endo she said "well then we won't be able to help you". 😕 The peanut butter I bought was organic . I had looked at the Aldi brand which I never had any issues with and it had soy so that's why I looked for a brand that didn't have any soy. I haven't had chocolate since February either due to the soy. I hadn't eaten anything but fresh fruit, vegetables, Chicken or fish since mid Feb. I did have some dried fruit which I seemed ok with but now the last two days I've gotten gas from that :(. I did have prunes awhile back and they also gave me gas which never happened before. I rarely eat prunes as it as always done the opposite of what it commonly is used for .
    • Sounds like the blood test is useless in your case.  Some times people have elevated antibodies for a few months after gluten-free.   The tests have a range for normal because it is normal to have  those numbers.  Two months from now, they may be slightly different.  There are other things that can cause low levels on these tests.  
    • Thank you for your help! Now I am beginning to understand more about this disease.  
    • Becca4130, Cyclinglady is right.  Most have those genotypes but they have found other gene types that doesn't always fit that mold. I haven't always known this (and I am not good at gene tests) I having only been diagnosed on blood serology alone. This verywell article explains it well. https://www.verywellhealth.com/hla-dq8-one-of-the-main-celiac-disease-genes-562571 depending on your ethnicity you might not type out well depending on where your ancestors are from. see their (verywell) paragraph about DQ8 variability by regions of the world. Be your own advocate your nutritionist is right to be cautious. see also this research about variations in genotyping can cause certain world/countries population to fail to show a positive gene typing depending on the region DQ2/DQ8 prevalence in the population mainly in Japan according to verywell. But it has shown up in people of Brazilian (assumingly) Portuguese ancestors as well (different gene typing). https://www.ncbi.nlm.nih.gov/pubmed/21484038 In their conclusion they noted in a subset of brazilians at least the wrong Regional gene typing test (American or European) might effect someone's test's causing a negative gene typing test. quoting CONCLUSIONS: "In this study, celiac disease was associated with the genotypes DQ2 and DQ8. DQ2 predominated, but the distribution of the frequencies was different from what has been found in European populations and was closer to what has been found in the Americas. The high frequencies of the HLA genotypes DQ2 and DQ8 that were found in first-degree relatives would make it difficult to use these HLA genotypes for routine diagnosis of celiac disease in this group." Assuming you don't have any of this mitigating factors then it is uncommon to be diagnosed as celiac disease without these gene types. You might only be able to get the more vague NCGS diagnosis.  But do a month food allergy elimination diet then when you re-introduce you will know if gluten is the culprit. You won't have to get  a doctor's confirmation of what your body already knows. Here is one more research article but a little older so there is probably newer research that might replace it. that might answer your question entitled "HLA-DQ typing in the diagnosis of celiac disease" https://www.ncbi.nlm.nih.gov/pubmed/11922565 I hope this is helpful. ******This is not medical advice. 2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included. Posterboy by the Grace of God,  
    • I would put my money on a latex allergy or intolerance.  You can not even bring latex balloons into the hospital anymore, just the Mylar ones.  Did you call to confirm the “gel”.  It makes not mention of a gel on the Amazon or Costco website.  
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