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How Do You Know If You Are Healing?


goldyjlox

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goldyjlox Contributor

I have been gluten free since August, I have been doing good at it I think. I have not been sick yet so I must be doing something right, right?? I used to have a huge bloated belly all the time, looked like I was pregnant, and I was always constipated...that was my problem, hardly ever D but always constipated. Now, I have lost my bloated belly (now its just baby fat!!) My face has colour so I dont look like the ealking dead, I have regular bowel movements, more energy, the tinglying feeling has left my fingers and toes, and those painful little bumps are not on my fingers anymore. So this would sound like I am healing right?? Here I thought that I would lose some weight by not eating the junky foods and become healthier but instead I have gained weight!!!! I am hardly eating much!!

I have not had any gluten that I know of, I have cheated a bit on the dairy....I am only off it for 3 months...but I never got any reaction to any that I have had.

So how do you tell if you are healing?? I would assume that eating gluten-free and not getting sick would be a good indication but I was never a sick person so I am a bit confused on how I should feel.

Sorry If I dont make any sense.

Jess


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blueeyedmanda Community Regular

For me, other than the GI symptoms going away. I had more energy and my overall personality was going back towards normal. I was not moping around and sad. I suddenly felt like a new person again....my old self :)

It does vary person to person though.

Vykt0r Rookie

I would imagine you'd also have less of an appetite considering the fact that celiac causes malaborption and therefore constant hunger in a lot of people.

Gemini Experienced
I would imagine you'd also have less of an appetite considering the fact that celiac causes malaborption and therefore constant hunger in a lot of people.

I think it's actually the opposite in most people. When I was eating gluten, I was never as hungry as I am now because all the bloating makes you feel full all the time. I would like a bird and feel full. Plus, with all the inflammation going on, hunger was not an issue. When you start to heal and your food is being absorbed like it should, you begin to realize what hunger really feels like. Things are working normally.

Malabsorption just means you are not absorbing your nutrients from food and has little to do with actual hunger pains themselves.

How does a person know they are healing? By all the things you described above. That's a really good sign. The weight gain can surprise people but it's common sense. You are absorbing calories and even though you may not be eating junk food anymore, a calorie is a calorie is a calorie! If you take in more than you burn off, you will gain weight. With each passing decade of life, your metabolism slows down and you have to less and less or move around more to compensate.

I snack on fruit and veggies all day to offset this as not only did I discover I had celiac disease, I went through menopause at the same time. Talk about a metabolism killer! :huh:

If your symptoms are disappearing and your color is good and you have energy, trust what your body is telling you.....you are doing a good job!

VioletBlue Contributor

I think the food issues have to do with where you were when you were diagnosed. I was always hungry and I had gained significant weight in the years prior to diagnosis. Now hunger is no longer the constant issue it once was, and even when I am hungry it no longer has the urgent do or die attitude to it that used to exist.

So I have lost weight since going gluten free. But I also don't eat much of any grains or special gluten free foods. I eat mostly whole foods now including dairy which I've never had a problem with. Prior to diagnosis I ate breads and pastas and cookies and cakes and frozen and pre-packaged foods all of which were bound to be higher in calories. So I think it depends on where you were prior to diagnosis and how you choose to pursue the gluten free diet as to what effect the diet has on your weight.

For me the most obvious immediate signs of healing were that the acid reflex and the diarrhea went away. My mood and outlook also improved significantly. And my nails have finally begun to grow again. I think any significant change along those lines is an indication of healing. But then we all express the disease differently, so healing is different for all of us.

It also takes time. A couple months is just the beginning. I've been gluten free since last December and my nails have just only begun to reflect that. All the other things that are secondary like the vitamin and mineral deficiencies take months and months and sometimes years to reverse themselves.

Violet

goldyjlox Contributor

Thanks. I am glsd to know that I am going about this right, the dietition said that I really did not need alot of her help as it sounds like I am doing a great job. My nails seem to grow more now also, I used to have a horrible time with my nails....constant nail biter. I do notice that I am more hungry now, I guess I have room in there besides air. Butr I have to work on eating a bit better and then at least I will feel better.

Thanks again.

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    • trents
      So, essentially all of the nutrition in the food we eat is absorbed through the villous lining of the small bowel. This is the section of the intestinal track that is damaged by celiac disease. This villous lining is composed of billions of finger-like projections that create a huge amount of surface area for absorbing nutrients. For the celiac person, when gluten is consumed, it triggers an autoimmune reaction in this area which, of course, generates inflammation. The antibodies connected with this inflammation is what the celiac blood tests are designed to detect but this inflammation, over time, wears down the finger-like projections of the villous lining. Of course, when this proceeds for an extended period of time, greatly reduces the absorption efficiency of the villous lining and often results in many and various nutrient deficiency-related health issues. Classic examples would be osteoporosis and iron deficiency. But there are many more. Low D3 levels is a well-known celiac-caused nutritional deficiency. So is low B12. All the B vitamins in fact. Magnesium, zinc, etc.  Celiac disease can also cause liver inflammation. You mention elevated ALP levels. Elevated liver enzymes over a period of 13 years was what led to my celiac diagnosis. Within three months of going gluten free my liver enzymes normalized. I had elevated AST and ALT. The development of sensitivities to other food proteins is very common in the celiac population. Most common cross reactive foods are dairy and oats but eggs, soy and corn are also relatively common offenders. Lactose intolerance is also common in the celiac population because of damage to the SB lining.  Eggs when they are scrambled or fried give me a gut ache. But when I poach them, they do not. The steam and heat of poaching causes a hydrolysis process that alters the protein in the egg. They don't bother me in baked goods either so I assume the same process is at work. I bought a plastic poacher on Amazon to make poaching very easy. All this to say that many of the issues you describe could be caused by celiac disease. 
    • catnapt
      thank you so much for your detailed and extremely helpful reply!! I can say with absolute certainty that the less gluten containing products I've eaten over the past several years, the better I've felt.   I wasn't avoiding gluten, I was avoiding refined grains (and most processed foods) as well as anything that made me feel bad when I ate it. It's the same reason I gave up dairy and eggs- they make me feel ill.  I do have a bit of a sugar addiction lol so a lot of times I wasn't sure if it was the refined grains that I was eating - or the sugar. So from time to time I might have a cookie or something but I've learned how to make wonderful cookies and golden brownies with BEANS!! and no refined sugar - I use date paste instead. Pizza made me so ill- but I thought it was probably the cheese. I gave up pizza and haven't missed it. the one time I tried a slice I felt so bad I knew I'd never touch it again. I stopped eating wheat pasta at least 3 yrs ago- just didn't feel well after eating it. I tried chick pea pasta and a few others and discovered I like the brown rice pasta. I still don't eat a lot of pasta but it's nice for a change when I want something easy. TBH over the years I've wondered sometimes if I might be gluten intolerant but really believed it was not possible for me to have celiac disease. NOW I need to know for sure- because I'm in the middle of a long process of trying to find out why I have a high parathyroid level (NOT the thyroid- but rather the 4 glands that control the calcium balance in your body) I have had a hard time getting my vit D level up, my serum calcium has run on the low side of normal for many years... and now I am losing calcium from my bones and excreting it in my urine (some sort of renal calcium leak) Also have a high ALP since 2014. And now rapidly worsening bone density.  I still do not have a firm diagnosis. Could be secondary HPT (but secondary to what? we need to know) It could be early primary HPT. I am spilling calcium in my urine but is that caused by the high parathyroid hormone or is it the reason my PTH is high>? there are multiple feedback loops for this condition.    so I will keep eating the bread and some wheat germ that does not seem to bother me too much (it hasn't got enough gluten to use just wheat germ)    but I'm curious- if you don't have a strong reaction to a product- like me and wheat germ- does that mean it's ok to eat or is it still causing harm even if you don't have any obvious symptoms? I guess what you are saying about silent celiac makes it likely that you can have no symptoms and still have the harm... but geez! you'd think they'd come up with a way to test for this that didn't require you to consume something that makes you sick! I worry about the complications I've been reading about- different kinds of cancers etc. also wondering- are there degrees of celiac disease?  is there any correlation between symptoms and the amnt of damage to your intestines? I also need a firm diagnosis because I have an identical twin sister ... so if I have celiac, she has it too- or at least the genetic make up for having it. I did have a VERY major stress to my body in 2014-2016 time frame .. lost 50lbs in a short period of time and had severe symptoms from acute protracted withdrawal off an SSRI drug (that I'd been given an unethically high dose of, by a dr who has since lost his license)  Going off the drug was a good thing and in many ways my health improved dramatically- just losing 50lbs was helpful but I also went  off almost a dozen different medications, totally changed my diet and have been doing pretty well except for the past 3-4 yrs when the symptoms related to the parathyroid issue cropped up. It is likely that I had low vit D for some time and that caused me a lot of symptoms. The endo now tells me that low vit D can be caused by celiac disease so I need to know for sure! thank you for all that great and useful information!!! 
    • trents
      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
    • trents
      The biopsy looks for damage to the mucosal lining of the small bowel from the inflammation caused by celiac disease when gluten is ingested. Once you remove gluten from the diet, inflammation subsides and the mucosal lining begins to heal. 
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