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Fading Fast. And I'm Just Getting Started :(


Cderbogh

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Cderbogh Rookie

Please help! I was just diagnosed a few weeks ago and officially started my gluten free diet about 2 weeks ago. I noticed a difference immediately, which was very comforting. I've been extremely careful to avoid all sources of gluten and am trying my best to avoid cross contamination. Im just getting used to all of the ingredients i need to avoid to remain gluten free and its taken a lot of work and getting used to. I thought I was finally getting the hang of it, but I just discovered that I also have a reaction to corn! I started looking up ingredients that contain corn and the list is overwhelming! I am getting very discouraged as I didn't even know anything about celiac 2 months ago. I was really looking forward to my DH, bowel issues, anxiety, insomnia, irritability, brain fog, and dizziness going away for good but now I feel like I'm climbing Everest! Do I have to avoid all corn products in order for all of my symptoms to clear up? If so....what can I eat?!? It seems as though there is gluten or corn in everything! This is a lot to handle and my doctors aren't being much help. I feel like I'm alone in this!


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1desperateladysaved Proficient

You are new here and I feel for you. After all, I was asking the same question about 6 months back when I was 2-3 weeks into my diet. . Many of us have had to go grain free to recover. I did a classic gluten free diet before I went grain free. I remember the dismay when I learned I needed to cut out more foods. I went through renewed withdrawl symptoms. Yet, I have plenty of good stuff to eat. I use nut flours, coconut flour, and bean flours as substitutes. My favorite is almond flour. It almost seems like the more foods I cannot have the larger variety I get in my diet. I just find more things I consider eating. You are going to learn alot more. It is very overwhelming and part of that is withdrawl symptoms. Your body is working very hard to recover. It will tell you more and more clearly what it cannot tolerate.

For me, meat and eggs have been my body's favorite food. These are gluten free and I hope you can eat them. I have really learned to enjoy beans.

I hope you will have some down time, and some time to learn some new tricks. This is a great place to learn how to put things into action into your own life.

Get well, and keep learning. Give yourself time to recover.

flagbabyds Collaborator

From the middle of my Freshmen year of high school to almost the end of my Senior year of high school I was corn free (along with gluten free--have been since I was 2 yrs old), corn is MUCH harder to cut out than gluten, but it can be done. I would suggest doing the corn and gluten free thing for a while, then slowly start trying small amounts of corn (for me it was non-processed corn on the cob that I had for a while before being able to eat any sort of processed corn products). The big problem with corn is HFCS (high fructose corn syrup) and other corn syrups that are in most processed foods. I would suggest doing meats, veggies, rice, potatoes, beans, fruits etc. for the time being, it's going to be a lot of cooking but it'll give your intestines time to heal before you start introducing more of the processed foods that could be causing you problems.

Good Luck!

rosetapper23 Explorer

flagbabyds is right--avoid processed foods for now. Then you don't even have to worry about reading the ingredients. Concentrate on eating only natural foods: meats, nuts, dairy, eggs, fruits, and veggies. Yes, lots of cooking.....but you'll feel better sooner. Someday you may be able to reintroduce corn into your diet. Until then, stick to natural foods--you won't be sorry!

Persei V. Enthusiast

Yep, sometimes going only gluten-free doesn't work :/ I'm on a grain-free diet, besides a few other minor intolerances (coffee, citrus, honey, peanuts). Basically I eat fruit, meat, veggies, beans, meat, potatoes, meat and nuts. Two times a month I bake myself a cake using flaxseed flour or almond flour, but there are plenty other flours not made out of grains, as well. Two other times I make nut butter.

I have a very sensitive leaky gut, but I can see improvement. My symptoms when eating something my gut didn't like went down from D, light cramping and just general uncomfortableness to bloating, some gas and rough bowel movements.

It gets better, and soon you will be able to add more foods back in (:

Cderbogh Rookie

Thank you so much guys. I'm slowly but surely accepting this new reality. It's just hard. But it's great to have people here who understand and who have already been going through it all :)

GFinDC Veteran

Hi Cderbogh,

You may be able to eat corn starch, but not corn protein. But that is something you will have to test to find out. All you have to do is put some corn starch in a glass of water and drink it. Many people who have reactions to foods react to the proteins, not the starch part.

Like someone said, if you stick with whole foods, you don't need toworry about it. Except for vtiamin pills and such, as they use corn starch or some other starch as a carrier.


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Wendelann Newbie

Thank you so much guys. I'm slowly but surely accepting this new reality. It's just hard. But it's great to have people here who understand and who have already been going through it all :)

I am in the same boat with you. I just started after fighting to accept it for months. Now that I am on the right track I am seeing more and more foods that are harsh on my system. I wonder though if it is because of the extensive damage to the small intestine? I have stuff come out whole that I ate the day before :( I take supplements though and that seems to be managing my nutrients for the most part :) This whole thing is like one massive head game! I think that even though I have had a rough time physically it has been equally hard mentally and emotionally.

GFinDC Veteran

I am in the same boat with you. I just started after fighting to accept it for months. Now that I am on the right track I am seeing more and more foods that are harsh on my system. I wonder though if it is because of the extensive damage to the small intestine? I have stuff come out whole that I ate the day before :( I take supplements though and that seems to be managing my nutrients for the most part :) This whole thing is like one massive head game! I think that even though I have had a rough time physically it has been equally hard mentally and emotionally.

Hi,

You may have low stomach acid. You could try some Betaine HCL and some pro-biotics to see if that helps. When the gut is irritated and food moves through too quickly it sometimes isn't digested completely. Digestive enzymes may help also. It seems like our guts are often irritated at first on the gluten-free diet. All the bacterial changes could be part of that.

Wendelann Newbie

Hi,

You may have low stomach acid. You could try some Betaine HCL and some pro-biotics to see if that helps. When the gut is irritated and food moves through too quickly it sometimes isn't digested completely. Digestive enzymes may help also. It seems like our guts are often irritated at first on the gluten-free diet. All the bacterial changes could be part of that.

Thanks very much! Before I was experiencing such high acidity that my guts (not really my stomach) were on fire all the time until it would end in diarrhea Now that I am not eating gluten, and a whole host of other things, I don't have that problem! Although I have swung in the complete opposite direction. As I has constipation now. Which is not great but it is a welcome change after what it's been like!
GFinDC Veteran

Thanks very much! Before I was experiencing such high acidity that my guts (not really my stomach) were on fire all the time until it would end in diarrhea Now that I am not eating gluten, and a whole host of other things, I don't have that problem! Although I have swung in the complete opposite direction. As I has constipation now. Which is not great but it is a welcome change after what it's been like!

Celiac disease can cause gut paint, I wonder it that was the cause instead of high acid levels? Celiac attacks the villi lining of the small intestine, so it can damage a large surface area of tissue. That can hurt. Since your pain resolved after going gluten-free, it seems ilkely gluten was the cause, IE celiac disease or gluten intolerance perhaps?

dreacakes Rookie

Oh honey, I feel your pain! I had the same thing happen... after going "gluten free" I also noticed I reacted to other grains.

I'd bet money that you react to rice, sorghum, all grains. We all do, it's just that some of us notice and some of us don't.

And that includes the starch... it's best to stay away from all forms of the foods you react to. Continuing the inflammation in your gut will continue to damage your health.

I highly recommend going on a paleo-ish diet. (I say "ish" because you can make some modifications depending on what you're specifically sensitive to, like for instance I can eat goat cheese just fine, so I do.) My doc put me on this diet, and it seriously saved my health. There are many gut-irritating foods that you might not suspect as well, including beans, nuts, and seeds. You don't have to cut them all the way out of your diet forever, but if you do for awhile, it will excelerate your healing process. (you can read more about it here: Open Original Shared Link )

This supplement is also great for soothing your gut and helping it heal:

Open Original Shared Link

Don't fret! You can still enjoy many, many yummy amazing foods, and there are ways to easily modify existing recipes to fit your diet. :)

These are some recipe sites that I love:

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

All the best to you, and I hope you're feeling lots better soon. :)

Cderbogh Rookie

Thank you thank you! I think I am going to try the paleo-ish diet bc another week in and I'm having trouble with dairy. It gives me terrible insomnia too �� Seems like I'm reacting to someone new every week! Hopefully just cutting it all out will help and then I won't really hafta second guess everything. I just wish I could fast forward to a time when I have this all figured out. Thanks for the help and encouragement! I'm gonna check out those recipe websites too! :)

RuskitD Rookie

I feel your pain. I went gluten-free, thought, hey, this is no big deal! Then the realization of the corn, dairy, then soy.....

In my case, just avoiding the actual corn, corn meal, corn starch, etc is not enough. Even the itsy bitsiest bit of citric acid in something makes me gain 10 lbs overnight and takes three weeks to go away. :( So discouraging! I was healthy two months out of 10, and that was when I only ate from my garden. No garden now.... ugh.

To address constipation, for those who have it.... make sure you get enough magnesium. That helped me. Then I got a fiber called Heathers Tummy Powder. Nothing like psyllium (which my body began to reject), it actually feels soothing to the guts, instead of violent. Also, I began ground flax meal daily trying to get Omega 3s, and that is helping also.

I also had to cut out all dairy for 6 months. I got brave enough to try butter again, and have not reacted to it or whipping cream. (the fat of the dairy)

For insomnia.... this was a duh moment for me. I always slept 10-12 hours a night, before I stopped grains. I now realize I only need 5 hours of sleep at night. I set my alarm to wake me up at 5 am, so I don't oversleep and cause trouble the next night... and I go to bed at midnight. My tossing and turning has stopped, I now sleep when I am in bed. Ahhhh......

Hang in there, everyone! It has GOT to get better. At least I am hoping it all will.

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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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