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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.

Celiac With Fever
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39 posts in this topic

I found an interesting site this evening that has to do with temp. It discusses low body temp. It says : http://www.mall-net.com/mcs/coldbody.html

I found it interesting because it says "allergies, skin and joint disorders, brain fog, lethargy" Which are just a few symptoms that align with Celiac.

I know I run a below normal temperature usually and when I get gluten I get a low grade fever.

I was just curious how many other folks out there run a below normal temp regularly.

-Jessica :rolleyes:

Yup...my normal temps are usually 96-97 degrees. Hypo thyroid is a leading cause of low body temps. I have Hashi's but even after successfully treating the Hashi's, my body temp. is still low. I think that's why heat bothers me so much. I also have seasonal and environmental allergies to boot and when I was going for allergy shots (which worked really well for me), the doctors new assistant had a habit of yapping too much while drawing the syringe of serum. Three times I popped a fever and had chills after my shots so I stopped them altogether. I just think that those with autoimmune problems may run weird fevers from time to time because our immune systems are a bit overactive. Maybe it's overkill when exposed to certain bacteria or viruses...our bodies go into overdrive more so to kill it off. All I know is I never really get sick anymore...no colds....nothing. However, during allergy season, I can spike a little temp. now and again. I take no meds at all for allergies.

Some things I have given up on trying to solve. Overall, I feel really well and never get sick. That's good enough for me.

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I don't have a high platelet count, no.

I had low grade fevers almost daily for about 2 years before I was diagnosed, but I had contracted a disease three years before then that can stay in the system and resurge quite easily. With no elevated platelets, we all thought it was this disease.

However, going gluten free had the fevers stop, and now the few times I've been glutened in the last month I've developed low grade fevers again, so I have a feeling that this is what has been getting me.

My daughter may also be developing this. The first few times she got the fever thing, we thought she was sick, but I finally started noticing that her getting sick was only happening at the same time she got gluten, so I'm tracking it now to see if that is always the case. Don't want to trust my memory and miss something, ya know?

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I have literally run a low grade fever for three years (not a typo either). :D It's getting better since I went gluten-free and have gotten my blood sugar under better control. If I get "glutened" or have a wild swing in my sugar, it's an immediate fever.

Hope that answers your question.

Brenda

Same here but now I only get a fever if I get glutened. My "normal" temperature was 99.4 - 99.9 for YEARS - even after a complete Infectious Disease workup by TWO Infectious Disease doctors!

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I had a fever of 105 after drinking some wine one night and went to the ER for it, docs have not been able to figure out for 4 years. I ran a low grade fever for about 6 months. I recently have discovered that all my problems have been from gluten. I had a high ANA and white blood cell count, and elevated Epstein-Barr. Celiac disease can cause yeast to proliferate, which teams up with Epstein-Barr, so my body was fighting against all of this. I was tested for celiac long ago, but was on the gluten-free diet at the time, which explains my negative results. Lately ingesting gluten has caused all of my symptoms to return, which has proven to me that without a doubt I have this disease. FINALLY after 4 years the pieces have come together!!

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I have also been having short bouts of a low grade fever on and off for about 2.5 years (since the birth of my last baby). Usually i get that 'coming down with something' feeling. aches and pains etc and even a sore throat, but it never turns in to anything.

I havne't yet had the biopsy, but have had postive blood test for celiac.

I didnt know there was any link between low grade fevers and celiac disease, so this is very interesting for me. (pieces of a puzzle etc)

I have always thought my fever was part of my Chronic Fatigue flaring up. Or a candida infection in my small intestine.

Perhaps it is celiac related.

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This is interesting. I have run fevers as long as I can remember. My mom has told me that I ran a lot of fevers as a baby. Testing has never shown anything. Now, that's not to say I haven't ever had a cold or strep throat with fever.. my fevers went away after being gluten free for 6 months. Now, I only get a fever when I get glutened or actually get sick.

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You might find some related threads if you do forum search on night sweats. there are several threads about them.

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My daughter is 8 and gets the same fevers as you do. Low grade fevers that come in the afternoon and go away with Tylenol daily for a couple weeks straight. She has lactose intolerance and has Celiac's. However, if your doctor can't diagnose you and you continue with daily fevers, or notice rashes with the fevers have him check your SED rate. If it is elevated, he needs to consider Still's Disease. I have Still's Disease and it was very hard to diagnose. It is very rare!

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I found an interesting site this evening that has to do with temp. It discusses low body temp. It says : http://www.mall-net.com/mcs/coldbody.html

I found it interesting because it says "allergies, skin and joint disorders, brain fog, lethargy" Which are just a few symptoms that align with Celiac.

I know I run a below normal temperature usually and when I get gluten I get a low grade fever.

I was just curious how many other folks out there run a below normal temp regularly.

-Jessica :rolleyes:

I have the same exact thing..I thought I had this celiac thing down(found out a year ago), but I still have low grade fevers that come and go..and I also have a below normal temperature normally. I also occasionally get blisters on my tongue..I never heard of Wilsons to be honest, but is it w/ celiac or instead of celiac..because I am tired, skin allergies, joint pain..and just cant think.

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Pre-diagnosis and was googling fevers and eating too much gluten and this thread came up. I feel as though I have found kindred sufferers! My normal body temp is low (97.6), which I always chalked up to being diabetic...but I just got glutened last night (my fault...ate junk all day and all of had gluten in it not to mention the fact that I was baking and had flour all over my hands. It took a couple hours to hit...but last night I was lightheaded, stomach upset, acid indigestion, headache, the whole nine yards. Finally the light headed ness and the feeling I was going to vomit left and I just had C and later D. Now, my blood sugars are running crazy and I have a low grade fever (for me) of 99. Now, after reading this thread, I don't feel so horrible and confused about what's going on!

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Fluctuations in how my body temperature feels to me (not necessarily enough for fever or to be low...and then again my thermometer might be a piece of crap) is one of the few problems I've had that has almost disappeared since going gluten free. Often with the chills I'd just get that icky flu-like, everything feels kinda off and gross.

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I've frankly been basically assuming the periodic low-grade fevers are from the celiac (I've eliminated most other obvious variables already and it seems like the simplest explanation). Before now, they were just another mystery thing my body did that was inconvenient and uncomfortable; I chalked it partially up to allergies/hay fever (which, for all I know, is actually the cause). Time will tell; I'm cautiously optimistic that if I'm overall healthier, it'll improve at least somewhat, regardless of direct cause.

So, I have little to contribute other than "me too," lol.

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Got cc'ed last night and now I have a 100.3 fever. I think it is part of the autoimmune reaction.

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Got cc'ed last night and now I have a 100.3 fever. I think it is part of the autoimmune reaction.

i agree same happens to me.  norm is about 96 or 97 glutened 99-100.

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    • Feeneyja and Captain NCGS, and Ironictruth It could be SIBO or it could be NCGS as Captain NCGS pointed out. see this research that matches your 84% of SIBO patients. https://www.celiac.com/articles/24058/1/Large-Number-of-Irritable-Bowel-Syndrome-Patients-Sensitive-to-Gluten/Page1.html Below I summarize their findings I quote “nearly 84% of the gluten- free placebo group showed a significant improvement in symptoms compared to just under 26% for the gluten consuming group.  This study confirms that a large number of patients diagnosed with irritable bowel syndrome are sensitive to gluten.  The team (of doctors) suggest that the term of IBS might be misleading (you think) and may change or delay an “effective and well-targeted treatment strategy in gluten sensitive patients”. “ This is in IBS patients already who fulfilled Rome III (lesion) criteria.  They should at least be considered Non-Celiac Gluten Sensitivity (NCGS) but that would be to admit NCGS is a real condition. If you are having NCGS symptom’s (Marsh Lesion) aka Rome III lesions then why is the diagnosis not NCGS instead of IBS?  The problem is most NCGS (apparently 84%) is misdiagnosed as IBS in a large number of cases or possibly SIBO in your case Feeneyja. Even when 84 % of those with IBS show sensitivity to gluten the diagnosis of Non-Celiac Gluten Sensitivity is not confirmed by a simple gluten antibody test and people  consider Non-Celiac Gluten Sensitive (NCGS at least in the medical community apparently) a myth rather they diagnosis someone’s digestive problems with IBS of an unknown cause instead of admitting gluten is the trigger thus allowing them to avoid what is considered a mythical diagnosis to some in the medical community. By all means if  you have been given an IBS or SIBO diagnosis insist at the least on a gluten antibody test and you may save yourself many years’ of suffering before the doctor’s figure out that Gluten is the trigger then you have hope for recovery if you get the right disease. And I don't mean NCGS. Because even this too is confusing low stomach acid I believe with IBS, NCGS and even SIBO. See my posterboy blog post about why  I think this is. JMG aka Captain NCGS I referenced the Columbia University Medical Center (CUMC)  research on NCGS that I think proves your point and mine. here is the care2 article that I think summarizes it well. http://www.care2.com/causes/new-study-confirms-existence-of-non-celiac-gluten-sensitivity.html NCGS is on the "Celiac Spectrum". quoting dr. hyman from the huffpost 5+ years ago and still people seem them as different diseases (or at least deny the existence of the one over the other) http://www.huffingtonpost.com/dr-mark-hyman/gluten-what-you-dont-know_b_379089.html "When you get these tests, there are a few things to keep in mind. In light of the new research on the dangers of gluten sensitivity without full blown celiac disease, I consider any elevation of antibodies significant and worthy of a trial of gluten elimination. Many doctors consider elevated anti-gliadin antibodies in the absence of a positive intestinal biopsy showing damage to be “false positives.” That means the test looks positive but really isn’t significant. We can no longer say that. Positive is positive and, as with all illness, there is a continuum of disease, from mild gluten sensitivity to full-blown celiac disease. If your antibodies are elevated, you should go off gluten and test to see if it is leading to your health problems." and the columbia research bears this out. ironictruth you want to catch it at the NCGS stage before it becomes full blown (villi burned to the ground) Celiac disease. You are right to run from the burning house (antibodies) causing you a weak but "positive" diagnosis. This concept of the biopsy "proven" diagnosis is archaic at best and barbaric at worse in this age of serology proven diagnosis of NCGS before the villi burns to the ground so to speak. see this online article by dr. rodney ford that discusses why this is today. http://drrodneyford.com/extra/documents/236-no-gold-standard.html and he too (though in minority) is forward enough thinking to diagnose his patients with serology alone. Why would we use a standard 60+ years old when modern medicine can diagnose the disease much better and much, much sooner than what till there is stage 3 marsh lesions. The dgp test you had can diagnose it the intraepithelial lymphocytes (IEL)  stage. That is good news.  The villi are already smoking (using my analogy) of a burning house from antibodies attacking the body. Problem is and I mean this as a complement to SIBO girl and Captain NCGS (I was this in an article about the ZIKA outbreak patients talking how much more they (those affected by the disease) knew than their doctor's who where treating them at the time) we (us) have become doctor's without diplomas'. One of us each has become an expert at recognizing SIBO, NCGS and Pellagra. The question is which one is right??? Maybe we are all right by degrees. I believe NCGS can be confused for SIBO. But I also believe and the research confirms it in my mind that low stomach acid mimics many of the symptom's of both SIBO and NCGS. So that tells me there is still a disease not yet correctly identified. To me the disease that answer's the most questions in my mind is Pellagra. Ironictruth, Freneyja, JMG taking a b-complex can disprove or prove this theory. here is the full paper by Prousky. http://orthomolecular.org/library/jom/2001/articles/2001-v16n04-p225.shtml decide for yourself but people routinely get better in 3 months time of taking  niacinamide 2 to 3 times daily or a b-complex and niacinamide 3/day for 3 months. The dosage does not matter.  It is the frequency. And a month will be enough to see improvement (100 count bottle).  I used to recommend to my friends a 100 count bottle because it was the most common way to find either Niacin/Niacinamide or a b-complex but when I found out your body could store 3 months worth in the liver and my experience with b-2 (riboflavin) and angular cheilitis (look it up on google images if you don't know what it is) for years probably 5+ I could not get rid of it for nothing. And I took b-2 (for a 100 count round) once before but learned b-vitamins needed to be taken frequently for best effect. So I bought a 300 count bottle (3 months worth) and took them (b-2/riboflavin) 2 to 3 day and the angular cheiliitis (leaking lips, cracked fissures at the side of the mouth) and it was nice and crusty went away and they have never come back since. but this was after I took the B-3 Niacinamide for a couple months firsts then I was able to absorb the b-2 (riboflavin) now and I put this condition in remission (i did not say cure) because if I get low again it might come back but remission. The same thing happened to my GI problems associated with NCGS (serology positive celiac diagnosis) without a biopsy proven (thank God) diagnosis. And that is my story. I would suggest jmg, feeneyja and you too too ironictruth buy a b-complex and see if a couple three months regimen might help put your GI symptom's in remission. we already know from research 5+ years ago that b-vitamins help celiac's with their well being. https://www.celiac.com/articles/21783/1/B-Vitamins-Beneficial-for-Celiacs-on-Gluten-Free-Diet/Page1.html quoting "For 6 months, patients received daily doses of either a placebo, or of B vitamins in the amount of 0.8 mg folic acid, 0.5 mg cyanocobalamin and 3 mg pyridoxine." They summarize quoting "These improvements, the normalization of tHcy levels, together with the substantial increase in well-being, led the research team to conclude that people living gluten-free with long-term celiac disease do indeed benefit from daily supplemental doses of vitamin B, and that doctors should consider advising the use of B vitamins supplements for these patients." So I am just saying what the doctor's recommend when recommending Niacinamide for your GI problems that Pellagra could be mimicking (masking the true cause) hence the 58% of celiac also have pellagra (that a majority) of Celiac's also are known to have. I am not a doctor.  But You can be a professor though with a masters so while I do preach Pellagra as a co-morbid condition of NCGS/Celiac disease it is only because the doctor's with diploma's research bears this out. So I try and make more people aware of this fact. (no I do not have  a master's either though a friend once said who has a masters said my research would qualify me if I had taken the courses) (And yes I know B-3 was not studied in this paper) but maybe now is the time to point out it should bee! Or SIBO girl, and Captain NCGS you can try it (B-3) for yourselves and see if it helps you the way it did the Pellagra kid/posterboy. If you want to study this topic more I summarized many of thoughts in this posterboy post https://www.celiac.com/gluten-free/blogs/entry/2103-why-and-how-pellagra-is-often-confused-with-celiac-disease-andor-other-gidigestive-problems-the-science-of-pellagra-a-hidden-epidemic-in-the-21st-century-presentingrevealing-as-ncgs-andor-possbily-celiac-disease/ I wrote a blog post that also said "I had Celiac disease but developed Pellagra" but I really think it is the other way around. (it is linked in the above post) if you want to read it there so I won't post it again. I was a pellagrain who was diagnosed first as a celiac.  The same way a SIBO might first be diagnoses as a IBS or NCGS patient.  Or the way a NCGS is first diagnosed as a IBS patient 84% of the time. Remission is possible I believe if and when you find the right/correct disease. And any of these GI conditions can be confused for the other and SIBO girl and Captain NCGS makes good points. But it seems to me Pellagra can be confused for not only the SIBO, NCGS, but if the research is right 58% (the majority) of Celiac's and it is easily reversible in 3 months time. You will not know if you are not willing to try it. **** this is not medical advice just deep research and my own experience with taking Niacinamide. But I will say  I am not the only one who has been helped on this board taking Vitamin B-3. I want you Iroinctruth, Feeneyja, Jmg to be the next ones. I know this post is way too long as usual but I had a lot of ground to cover. quoting a friend 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,
    • After my crash and burn gluten challenge of 2016, I wander off yet again Into the land of eastern and alternative medicine to heal. While I am grateful to many (not all) western medicine  Dr s of the past , for the past 2 decades the ones who give me relief for my lifetime ails are the alternative/eastern practitioners. I'm not starting a debate as both branches have their strengths, often the shame is they are seperated in healthcare, for likely humanity and public health imo would be best served by their encouraged collaboration/mutual recognition,but alas not my problem to solve. Much bigger then me and quite frankly, I'm too busy healing to tackle that mountain. Regardless, I now have "shoes that fit my carpet bag " of decades of multiple misdiagnosis /undiagnosis collection. They can be combined and labeled celiac and fibromyalgia. I was shocked at first at the news, I consider those really serious. Is AWOL really that ill? I've read up more  on both disciplines descriptons etc for these conditions, I'm in shock for the "shoes" fit perfectly . I know based on western test results I'm far from textbook/ gold standard celiac (but I failed to get past day 6 of my gluten challenge -likely speaks for itself) and fibromyalgia is quite demeaned/dismissed from my past knowledge amongst the western medicine world and greater society. (Friends /family in western medical fields) Is this still the case? My lifetime gi issues, the 30 plus years multiple chemical sensitivities ( go back to childhood-I keep very close to the vest), 20 plus years symptoms of muscle issues / myalgia, now have the names of celiac & fibromyalgia. Mixture of feelings of relief to be recognized, but also knowing my named illnesses are likely not recognized or are minimised by my western medicine trained family and friends and greater society. Can anyone offer some encouragement to help me cope at this time of healing? My accupuncture visits have been truly helpful, but my last visit is giving me a lot to process chemically, biologically, and spiritually. It's like someone unleashed the flood gates of all the symptoms of both illnesses at once in a combined package for me to experience in a one transparent package.  Very enlightening and to be blunt I feel like crap. So it's time to accept the package names and all, the curtain was lifted and the waxing and waning symptoms of fibromyalgia we're released. Please share any positive support or stories you have on coping with celiac recovery, celiac/fibromyalgia, and  healing by accupuncture. It will be much appreciated. As it is abundantly clear AWOL is here to stay on the celiac.com forums. Thanks  
    • https://www.celiac.com/gluten-free/topic/116482-supplement-and-foods-you-take/ ^ I did this a while back where some of us have posted what we take and eat to get our nutrients. Mines changed a bit since then since I can not eat any grains, sugars or fruits.
    • I take 2 Slice of Life gummy multivitamins and drink 2 Ensure high protein per day. Both are gluten free.
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