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How Long On Gfd Until Improvement Seen?


mhalpin12

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mhalpin12 Apprentice

I've decided to take the plunge, go gluten-free, and hope that this DH-like rash will disappear. Question is, how long should I give it? A month? 3 months? Longer? Can others please share how long it took to see healing of the rash after going gluten-free? I'm not taking any other meds for it, and I'm even putting off acupuncture treatments so I can see what the diet alone is doing for it. I know acupuncture would help it tremendously, as it has in the past, but I don't want to muddy up the waters when it comes to what is helping it. Thanks for any thoughts!

Michelle in TN


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Lynayah Enthusiast
I've decided to take the plunge, go gluten-free, and hope that this DH-like rash will disappear. Question is, how long should I give it? A month? 3 months? Longer? Can others please share how long it took to see healing of the rash after going gluten-free? I'm not taking any other meds for it, and I'm even putting off acupuncture treatments so I can see what the diet alone is doing for it. I know acupuncture would help it tremendously, as it has in the past, but I don't want to muddy up the waters when it comes to what is helping it. Thanks for any thoughts!

Michelle in TN

Hi, Michelle!

It is different for everyone. You might want to take at a similar thread that was recently started here:

https://www.celiac.com/gluten-free/index.php?showtopic=64098

Hope this helps!

Lyn

Glamour Explorer

I think I have been gluten-free about 5 weeks but I am sure I got contaminated during the first week or more, especially from hidden gluten (tortilla chips that won't claim to be gluten-free) and CC.

I have noticed more time between itch attacks, and I have even gone several hours at a time without itching. Night is still bad, or if I get overheated working or under covers.

Nerves still seem to trigger itch. Stress triggers.

I did not cut out enough sugar and dairy either.

I have not been diagnosed celiac, just have a feeling. Stomach went down pretty fast and is still slowly going down.

ravenwoodglass Mentor

I was on a very strict doctor guided elimination diet and consuming only whole unprocessed foods when I went gluten-free. I stopped forming new sores pretty quickly, like within a couple of weeks, but it did take a couple of months for the ones I had to heal. In the beginning it took very, very little gluten to activate new lesions so I remained superstrict even after going back to a normal but gluten-free diet. I also eliminated gluten sources from my toiletries and lotions as soon as I knew I had DH.

mhalpin12 Apprentice

Thanks so much for the replies. Now I know that I need to commit to this for several months. I finally got all of my personal care items gluten-free today, after two different trips out and tons of online research. Very frustrating and very expensive to switch everything over. Ugh. But if I'm going to do it, I'm doing it all the way. I hope that going gluten-free bears some fruit with regard to this awful rash.

Another question: Wondering how many here on the boards who do a gluten-free diet for DH actually have an official DH diagnosis with a positive biopsy. That's the only thing that's nagging at me, that I don't have any proof that this is DH. Yes, my biopsy was done incorrectly and therefore negative. But I wonder now if I should pursue another biopsy, done correctly. Could I still get a biopsy after being gluten-free (just for a couple of days)? Seems like I could get a valid biopsy, since the IgA deposits seem to remain in the skin for a while after going gluten-free. Sigh. Oh, well. Hubby thinks this is a valid way to go, just going gluten-free and see what happens.

Michelle in TN

  • 1 month later...
dh mom Newbie

Thanks so much for the replies. Now I know that I need to commit to this for several months. I finally got all of my personal care items gluten-free today, after two different trips out and tons of online research. Very frustrating and very expensive to switch everything over. Ugh. But if I'm going to do it, I'm doing it all the way. I hope that going gluten-free bears some fruit with regard to this awful rash.

Another question: Wondering how many here on the boards who do a gluten-free diet for DH actually have an official DH diagnosis with a positive biopsy. That's the only thing that's nagging at me, that I don't have any proof that this is DH. Yes, my biopsy was done incorrectly and therefore negative. But I wonder now if I should pursue another biopsy, done correctly. Could I still get a biopsy after being gluten-free (just for a couple of days)? Seems like I could get a valid biopsy, since the IgA deposits seem to remain in the skin for a while after going gluten-free. Sigh. Oh, well. Hubby thinks this is a valid way to go, just going gluten-free and see what happens.

Michelle in TN

dh mom Newbie

Go back and Get diagnosed!!! gluten-free is too hard to do if you don't have to. It is for the REST OF YOUR LIFE!!!

Take the time now to get an accurate test, find another derm if necessary. Otherwise, you will need to reintroduce wheat to get a biopsy of blisters again. Do it while you have them! Good luck


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tarnalberry Community Regular

Yes, going gluten free and seeing how it goes is perfectly valid. But only do it if you know you can trust yourself to be honest with yourself. If gluten *does* cause problems (anything, really), then you need to be honest that you can't have ANY, and not just sneak a little here and there because there isn't an official DX. For some people, that works (being honest and sticking to the diet without a formal DX, but their own reaction to the diet). For others, it just prolongs the misery.

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    1. - trents replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
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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. 
    • 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 
    • 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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