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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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    • Samanthaeileen1
      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
    • Wheatwacked
      My son was diagnosed when he was weaned in 1976 after several endoscopies.  Given your two year old's symptoms and your family history and your pediatrition advocating for the dx, I would agree.  Whether an endoscopy is positive or negative is irrelevant.   That may happen even with endoscopy.  Pick your doctors with that in mind. In the end you save the potential trauma of the endoscopy for your baby.   Mine also had really nasty poop.  His doctor started him on Nutramigen Infant because at the time it was the only product that was hypo allergenic and had complete nutrition. The improvement was immediate.
    • RMJ
      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
    • Samanthaeileen1
      here are the lab ranges.  Normal ranges for tissue transglutaminase are: <15.0 Antibody not detected > or = 15.0 Antibody detected normal for endomysial antibody is < 1.5. So she is barely positive but still positive. 
    • JoJo0611
      I have been diagnosed with coeliacs disease today after endoscopy, bloods and CT scan. I have also been diagnosed with Mesenteric Panniculitis today. Both of which I believe are autoimmune diseases. I have been told I will need a dexa scan and a repeat CT scan in 6 months. I had not even heard of Mesenteric Panniculitis till today. I don’t know much about it? Has anyone else got both of these. 
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