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If I Was Only Off Gluten For A Month, How Long Back On B/f Blood Test?


JoyMC

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JoyMC Newbie

hi,

this is my first post, but i've been reading for a bit. looks like a great community.

i have only been off gluten for about a month, and i wasn't super careful about cross-contamination; i continued to eat oats and bake bread for my family, etc. now i want to do the blood panel (i understand it's not totally conclusive and i also understand why many people don't bother testing), and i'm wondering how long i need to be back on gluten before the blood test. i looked through the other thread on this question, but that person had been off gluten for like a year.

i'm thinking since i wasn't super seriously off gluten for very long, it shouldn't matter too much? i've been very sick for about ten years prior. i feel awful back on the gluten and could stick it out, but after one day back on gluten, my breastfed baby had an insane diaper rash, and i don't want to put him through more than a week of gluten, if it's affecting him too.

thanks!


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Nugget Newbie

hi,

this is my first post, but i've been reading for a bit. looks like a great community.

i have only been off gluten for about a month, and i wasn't super careful about cross-contamination; i continued to eat oats and bake bread for my family, etc. now i want to do the blood panel (i understand it's not totally conclusive and i also understand why many people don't bother testing), and i'm wondering how long i need to be back on gluten before the blood test. i looked through the other thread on this question, but that person had been off gluten for like a year.

i'm thinking since i wasn't super seriously off gluten for very long, it shouldn't matter too much? i've been very sick for about ten years prior. i feel awful back on the gluten and could stick it out, but after one day back on gluten, my breastfed baby had an insane diaper rash, and i don't want to put him through more than a week of gluten, if it's affecting him too.

thanks!

Hello,

I had a similar experience as you. I had gone low-gluten (not totally gluten-free.... didn't worry about cc) for about three months on my own because I knew I had an issue with wheat and so I thought I'd try out gluten-free to see how I feel. When I had my check-up with my doctor I told him how great i was feeling and he sent me for an antibody blood test that day. It came back a raging positive. That was after three full months. So, as far as blood tests are concerned, just get it done ASAP. It takes a long time to heal. My doctor had me get a endoscopy to confirm the diagnosis and that is where I had to eat gluten again...four servings a day for a whole month. It was horrible.

My advice: Get all your testing done before healing any further. After blood tests, if your doctor decides to do an endoscopy and wants you to eat gluten in preparation, the less healed you are, the less awful you'll feel consuming gluten to prepare for the test.

Good luck!

heather Goble Rookie

hi,

this is my first post, but i've been reading for a bit. looks like a great community.

i have only been off gluten for about a month, and i wasn't super careful about cross-contamination; i continued to eat oats and bake bread for my family, etc. now i want to do the blood panel (i understand it's not totally conclusive and i also understand why many people don't bother testing), and i'm wondering how long i need to be back on gluten before the blood test. i looked through the other thread on this question, but that person had been off gluten for like a year.

i'm thinking since i wasn't super seriously off gluten for very long, it shouldn't matter too much? i've been very sick for about ten years prior. i feel awful back on the gluten and could stick it out, but after one day back on gluten, my breastfed baby had an insane diaper rash, and i don't want to put him through more than a week of gluten, if it's affecting him too.

thanks!

So glad to see this post as I have the exact same question! I went gluten free for just about a month as well. I wasn't super careful at first of cross contamination, but ended up having bad reactions with even the smallest amount after a week, so was very careful the last three weeks. I went to see a GI who wants to run the blood tests (looks like not the full panel though) and then do the endoscopy as well. I've been reading everyone's posts for a bit and have heard mostly the rule of thumb is 3 months back on gluten. The GI told me I only needed to be on gluten for 3 days! I scheduled the endoscopy and blood tests so that it was a month back on gluten. Anyway, I was hoping that with only doing a month off, a month back on would be enough.

The first few days to a week I had pretty bad reactions to being back on gluten, but they have become less severe and are pretty much back to what they were before going gluten free- mostly extreme fatigue, headaches and constipation. The only thing that is worse is joint pain, my knees are really bothering me and I have nausea after eating.

Cara in Boston Enthusiast

I was only gluten free for 10 days. I guess I was pretty good at it because my blood test went from "absolutely positive" to perfectly fine. My Dr. said eat gluten (4 slices whole wheat bread/day) for three months then come back to be re-tested.

Since it is different for everyone, I have convinced him to at least check (blood test) after 6 weeks to see if the full three months is necessary. He agreed but seems skeptical.

He is a celiac specialist, so I have to assume he knows what he is talking about.

I am hoping my blood shows something going on . . . I'm ready to be done with this.

I read ("Dangerous Grains") that the damage can heal in as little as a week but could take up to 6 months to show again.

Cara

JoyMC Newbie

wow, such different responses. i'm not putting my baby through three months of this, though. (or my five year old, b/c i feel about a million times worse now than i did BEFORE i even went off gluten and i'm not exactly a fun, awesome parent in my current state.)

i'd rather just go off gluten w/o answers than do this for three months.

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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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