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Does Anyone Of This Sound Familiar?


veryconfused

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veryconfused Newbie

Hello,

I've been reading a lot about Celiac's and I've long suffered from symptoms that really sound similar to what I read online. I know it's never good to self diagnose via the internet, but I'm without access to healthcare (no insurance) at the moment.

1) From the age of about 14-15 onward I've suffered from (this sounds gross and it is), painful lesions on my buttocks, sometimes with puss in them. And they NEVER seem to go away. Sometimes they subside for whatever reason, but they have always come back. It's long been a source of shame and embarrassment for me. Even sitting can be difficult. Sometimes the get infected and filled with puss. Like I said, totally gross.

2) Recently (I'm in my late 20's) I've been getting painful sores in my scalp, mostly in the back of my head and sometimes on the back of my neck. These suckers ITCH like crazy and often times become infected. I've got no idea what's causing them, I'm a clean person with SHORT hair. They hurt! I think maybe they are worse when I am stressed out?

3) On my face I've got what I've always have thought was acne. But I'm starting to think it is something else. It's usually around my mouth often times in the corner of my mouth, which is really painful. Recently (this has almost pushed me over the edge) I've developed what can only be described as a painful, red blistering area on the bottom/corner of my lip line/mouth. It makes me so embarrassed to interact with people. Sometimes I will wake up from a nap and have little red sores all around my lip line. Recently I felt inside of my mouth and I have an open sore. I don't remember biting my cheek or anything, I don't know where this has come from.

4) Lactose intolerance or so I think. I've long had what seems like a lactose intolerance. Whats weird is there never seems to be a pattern, sometimes it gives me the runs, other times I have nothing happen at all?

5) Small red marks on my chest and shoulders. These appear randomly. Like I said I'm a clean person, these look like zits that never come to the surface. Last week I had matching red marks underneath both of my armpits. One developed a white head filled with puss.

6) Last week I developed red sores in almost matching locations on my temples. I can't figure out what caused them. I had chicken strips covered in a batter the night before, I read that this can cause them? These are really painful and embarrassing as well. My forehead lately has been perpetually breaking out with little bumps that sometimes resemble zits, other times its just red marks that never go away.

7) In my eyebrows I get painful bumps that go and come as they please. I can't find the pattern.

Sorry for the long and drawn out post but I'm really losing a lot of my life to these ailments. They control me, they keep me from being happy and I'm really tired of it. My wife says its not that noticeable but for me, its very distracting. Does any of this ring a bell to anyone? Randomly I started using Anti Dandruff shampoo, Nazoril I think it is, on my scalp and I tried washing my bottocks with it. It seems to help? very strange.

Anyone out there.. does ANY of this ring a bell to you? Thank you for your time.


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ravenwoodglass Mentor

What you are describing sounds an awful lot like the DH that plagued me from childhood. A derm can biopsy the areas next to the sores to look for the antibodies. Do find one who is familiar with DH as if the biopsies are not done correctly and they are not looking for DH they won't find it.

You should also get a blood screening for celiac although those can come back with a false negative also. After you have finished all the testing you choose to do try the diet, and be sure to eliminate gluten from all topicals also. It can take some time for the sores to heal but heal they will if they are a gluten reaction.

You may want to add a good 'stress' vitamin with high levels of the B vitamins. The sores you are describing in the corners of your mouth could be due to a deficiency in the B vitamins.

Beccels Rookie

Im not a Dr, but it sounds to me - like your body is trying to get rid of something that it doesn't like. And its coming out through your skin.

Why don't you just try, taking gluten, wheat and dairy out of your diet or just gluten. Its hard, I know - but its not going to have a negative impact on you. If you give it a red hot go for a for 4 or 5 weeks, you might see some results.

But it really is best to try and get to a Dr, obviously.

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    • 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. 
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      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 
    • marion wheaton
      Wondering if anyone knows whether Lindt chocolate balls are gluten free. The Lindt Canadian website says yes but the Lindt USA website says no. The information is a bit confusing.
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