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Itching


BrenLou

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BrenLou Rookie

I have had chronic hives for years which we're determined to have been caused by celiac. The hives have diminished by at least 90% and I rarely get new ones however, some are lingering and still itch terribly. Is it possible to know how long it might take for itching to stop? I have been gluten free six and a half weeks. Thank you!


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cyclinglady Grand Master

My last bout of chronic hives lasted about six months and was linked to a gluten exposure.    It sounds like you are healing much faster than me!  Keep to the diet.  My allergist prescribed a cocktail of antihistamines which eliminated at least the itching.  
 

Funny though, my allergist blamed my Hashimoto’s.  Some report that it could be a stand-alone autoimmune disorder.  Learn more:

https://www.aocd.org/page/Urticaria

BrenLou Rookie
17 hours ago, cyclinglady said:

My last bout of chronic hives lasted about six months and was linked to a gluten exposure.    It sounds like you are healing much faster than me!  Keep to the diet.  My allergist prescribed a cocktail of antihistamines which eliminated at least the itching.  
 

Funny though, my allergist blamed my Hashimoto’s.  Some report that it could be a stand-alone autoimmune disorder.  Learn more:

https://www.aocd.org/page/Urticaria

Thank you for taking time to answer me.  I have had chronic hives for nearly 10 years.  They have gotten worse and worse until I had hives on top of hives, severe bruising under there hives and sometimes bleeding under the hives.  For a very short time  last year (8 months) they were fairly mild after my allergist prescribed Allegra 180 but then they flared up worse than ever for months.  My daughter commented to me that she was beginning to itch around her ankles after she completed the Healthy 30 and reintroduced gluten.  That's why I went gluten free but I was so shocked when my digestive and intestinal problems began clearing up also.  Well, that's a lot, isn't it?  I just need to give it more time, I believe.  And from what I've been reading, they may never fully clear up because that's the nature of autoimmune issues.  Again, thank you!

cyclinglady Grand Master
(edited)

Autoimmune Disorders fall under the umbrella of Hypersensitivity.  Celiac disease is under type 4.  You can have issues with several hypersensitivity  types (like an IgE Type 1 allergy to cats).  You can learn more here:

https://www.amboss.com/us/knowledge/Hypersensitivity_reactions
 

What I am trying to say is that all of these types are linked.  If one flares up or is activated, it can impact other types.  For example, once allergy season hits, my nut and horse allergy becomes worse.  If my celiac disease is activated, it triggers my hives.  I still get hives today, though they are mild and often appear when I am exposed to say, a bug bite (1 mosquito bite causes almost 100 hives around the bite).  I swell up and get hives all over my body from many medications.  It is way worse if I am also dealing with active celiac disease.  But my everyday-starting-at 4:00 pm-hives (beginning with a tummy ache, an itchy head and a cascade of eruptions down to me feet), has finally resolved.  Prevention?  No gluten!   

 As a kid and up until just recently, I was allergic to the cold.  Yep.  Swelling and hives from cold water, air or snow.  Made it hard to ski, but I did it.  That seems to resolve with healing based on my last ice cube test. Calming down all my autoimmune and avoiding my triggers is key.  
 

Google Mast Cell Activation Syndrome for other “allergy type” explanations.  

A gluten free diet just might do the trick for your hives too.    But keep at it.  It takes time.  Avoid your known triggers and try to identify new ones.  

If you have kids, consider getting them tested, especially if symptoms warrant and before they go gluten free.  Celiac disease is systemic, genetic and co-exists with other autoimmune disorders.  
 

Good Luck!  

 

Edited by cyclinglady

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    • marion wheaton
      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
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