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Is There Such A Thing As Mild celiac disease


jacobsmom44

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jacobsmom44 Newbie

I was diagnosed with celiac disease last month. I am doing ok, but not completely gluten-free yet. It all started when I joined Weight Watchers and started eating whole wheat and whole grains. I started getting stomach-aches. After being diagnosed, I gave up the wheat products and started feeling better. I have always had gastro problems but my doctor said it was Irritable Bowel. I don't feel like I get sick when I cheat. From what I read on some of these posts, people get horribly sick from "just touching bread". I can't say that has ever happened to me. The GI Doctor did a scope and he says he is 90% sure it is celiac disease, but why doesn't some of the foods bother me? Is it still going to hurt me in the long run if I continue cheating (even if it doesn't bother me)?

I need help?


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CarlaB Enthusiast

There is no such thing as mild celiac. You either have it or you don't. Even if you don't feel symptoms, you are causing damage to your intestines every time you consume gluten, even if it's a small amount. Typically, the longer you are off it, the more you feel it when you accidentally consume some. So, even though you don't feel it now, once you haven't eaten it in a while, you probably will start noticing, especially as your gastro problems start clearing up. Think of it like smoking, a smoker might have bad general health, so stops smoking. At first he notices no difference, but after a few months off it, even a single cigarette might make them ill. It's the same way with gluten.

Welcome!

AndreaB Contributor

If you have been diagnosed with Celiac (and it sound like you have), then you need to be 100% gluten free for life. Wheat, rye, barley and oats (unless you buy the exp uncontaminated kind) free. There are people who don't have obvious symptoms (and some are on this board) but are still doing damage. I am one that didn't have any obvious symtpoms before going gluten free. Now I get some stomach and intestinal distress until it clears my system, usually a day.

Also be sure to check you personal care products, including make up. You'll need your own toaster (if you toast gluten-free bread), your own non stick pan (if you use them, Stainless steel is ok), new colander. Basically, plastics and non stick pans cause the problems in the kitchen.

There is a learning curve to this diet. The most important is the food, then work your way through the list. Some of the quickness of getting through it depends upon the funds available to replace stuff. This forum is a great place to learn from a lot of people's experiences.

Welcome. :D

2kids4me Contributor

Each person will have different outward symptoms, some mild, some horrible and immediate. BUT all celiacs suffer the same internal damage - flattening of the villi, inflammation,and impaired absorbtion.

I have 2 children - one may experience some joint pain or mild stomach ache if he gets a big "gluten oopsie" (oopsie poopsie :o )

the other child gets severe migraines, neck, back pain and stomachache with nausea - within hours of even a teensie bit of gluten.

and guess what - the child with the most damage to the small intestine - was the one with the least outward symptoms (totally flat on all biopsies and visually the GI doc diagnosed celiac before the pathology was back).

This child was only checked cause he was diabetic and sibling was diagnosed celiac.

Do not rely on outward symptoms.

eKatherine Apprentice
Each person will have different outward symptoms, some mild, some horrible and immediate. BUT all celiacs suffer the same internal damage - flattening of the villi, inflammation,and impaired absorbtion.

Some people with severe intestinal damage may have no symptoms whatever, while some people actually don't get any intestinal damage. They may just wake up one day and find that they have neurological problems which prevent them from leading a normal life, and they may never recover.

mouse Enthusiast

I hope you decide to go completely gluten-free. There is not just a little gluten-free. You might find yourself with some auto-immune diseases that you do not want, somewhere later in life. My understanding is that a small amount of gluten will require 3 to 4 weeks of recovery time in your small intestine. The diet is really not that hard, once you get over the learning curve. I do most of my shopping in a regular grocery store. I go to the health food store a couple of times a month for things I cannot get in the grocery store. I also eat out several times a month. I am just very careful where I eat. This is really all very doable and well worth the extra effort. Good luck.

Mandy F. Apprentice

I think I fall into a similar category as you. I had no real symptoms before being diagnosed and for a couple of months afterward, I went sort of gluten free. I decided one day to test the daignoses and stayed completely gluten-free for 3 weeks and was extrememly careful. At the end of the 3 weeks, I had some powdered donuts (I really miss those... :rolleyes: ) and within 30 minutes, I was so exhausted that I could hardly move. Now, if I get glutened, I might have some gastric symptoms, but I'll know for sure when I get the sudden energy drain... Following the diet usually isn't really that bad. I'm still in the learning stages, but for the most part, I don't have any major problems. There are a lot of really good substitute foods and if you skip the substitutes, you're left eating a healthy well-balanced meal. Good Luck!


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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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