Seemingly intolerant to everything

[celiwhat]

i was diagnosed back in May and have been gluten free ever since. I feel better of course considering I could not move before but I am still struggling. I am constantly bloated. Pretty frequent abdominal pain, every morning I wake up with cramps. When I have to go to the bathroom I HAVE to go right then and it hits me hard. I frequently am burping. I just generally don't feel well and it is so hard to keep going with life sometimes. I'm not excited for things like I used to be. My anxiety is through the roof, I am seeing someone about this. At time of diagnosis I also was told I have lymphocytic colitis and lymphocytic gastritis which I was told would likely go away with gluten-free diet.

The hardest part is that I never feel good enough to figure out what could be causing issues for me food wise. Sometimes something may bother me and others it may not. I have been avoiding dairy and am officially being tested for lactose intolerance this week. However I have been known to cheat. I DO have an immense issue with corn. This is the only thing that seems to affect me immediately and I feel miserable for at least a day or two. I also avoid tomatoes for the most part because of the acid reflux I get when I eat it/other acidic foods.

i have been on so many diets I just lost interest in trying anymore. I'm just too overwhelmed I dunno how to go about it. I'm most frustrated because I went to the celiac doc and he told me I should be just fine by now and that corn shouldn't be an issue and he apparently had never heard of it before. He seemed so confused why I still felt like this and said maybe I have issues with food because I have ibs or something. Which pissed me off. I've been on the FODMAP diet before and I'm not sure I saw much relief? Idk but my blood work looked good and my TTG was at an 8 which 3 is the normal range. 

I'm just posting here cause I need some good old celiac support. I'm lost.

[LookingforAnswers15]

Hi,

I am sorry to hear that you are having a difficult time. It has been only 5 months since you have been diagnosed and although your tgg is higher than normal, it could be worse. Mine is still higher even after a year on gluten free diet. Although it is hard, be patient. You have already shown improvement and with strict gluten-free diet and avoiding dairy (at least for now), you will heal and feel even better.

I can tell you what I have learned that has been good for me:

- Bone broth. 

- No gluten free processed food (cookies, snacks). I used to eat them but realized I would have some symptoms afterwards.

- Check if you are reacting to soy, dairy (which you already know, so you have to avoid), eggs, nightshades as these are the most common things we react to. I also cut out corn.

- Check out AIP diet.

- Eat bananas- help with digestion.

- Drink enough water.

- Use coconut oil. (You can put one teaspoon into your tea, coffee, cook with it).

I have had so many more scary symptoms and most of them went away after I focused on eating a clean diet. I know it is hard but when you are not feeling well, even if you are in your bed, try to look for some recipes, food that can help you heal. I use pinterest to look up smoothies, anti-inflammatory food, aip diet, etc. This forum has helped me a lot to figure out some of this because my dr. never even mentioned a possibility of me reacting to other things.

I am definitely not impressed with some of the doctors I had gone to. They really need to familiarize themselves with celiac more. One dr. told me that we (referred to a medical community) still did not know much about celiac disease and I had to bite my tongue not to tell him that celiac disease was well-studied but that he was the one that did not know much about it. I really think I knew more about it than he did and he just wanted to argue that I was only under some stress, when the only stress I had was the fact that I was paying him and he did not even listen to me or tried to help.

I hope you feel better soon! Good luck.

[squirmingitch]

Whatever you eat make sure it's cooked. Veggies & fruits are much easier to digest when cooked. That should help you while you're healing. The bone broth LookingforAnswers mentioned is extremely nourishing and very, very gentle on the tummy. 

 

{{{{{{{{{{{{{{HUGS}}}}}}}}}}}}}}}}}}

[celiwhat]

Hi,

I am sorry to hear that you are having a difficult time. It has been only 5 months since you have been diagnosed and although your tgg is higher than normal, it could be worse. Mine is still higher even after a year on gluten free diet. Although it is hard, be patient. You have already shown improvement and with strict gluten-free diet and avoiding dairy (at least for now), you will heal and feel even better.

I can tell you what I have learned that has been good for me:

- Bone broth. 

- No gluten free processed food (cookies, snacks). I used to eat them but realized I would have some symptoms afterwards.

- Check if you are reacting to soy, dairy (which you already know, so you have to avoid), eggs, nightshades as these are the most common things we react to. I also cut out corn.

- Check out AIP diet.

- Eat bananas- help with digestion.

- Drink enough water.

- Use coconut oil. (You can put one teaspoon into your tea, coffee, cook with it).

I have had so many more scary symptoms and most of them went away after I focused on eating a clean diet. I know it is hard but when you are not feeling well, even if you are in your bed, try to look for some recipes, food that can help you heal. I use pinterest to look up smoothies, anti-inflammatory food, aip diet, etc. This forum has helped me a lot to figure out some of this because my dr. never even mentioned a possibility of me reacting to other things.

I am definitely not impressed with some of the doctors I had gone to. They really need to familiarize themselves with celiac more. One dr. told me that we (referred to a medical community) still did not know much about celiac disease and I had to bite my tongue not to tell him that celiac disease was well-studied but that he was the one that did not know much about it. I really think I knew more about it than he did and he just wanted to argue that I was only under some stress, when the only stress I had was the fact that I was paying him and he did not even listen to me or tried to help.

I hope you feel better soon! Good luck.

thanks for the post. Unfortunately. A lot of what you mentioned are things I already take into practice. I almost never eat processed/ "gluten free" labeled foods. And as I said before, it's just very hard for me to pinpoint specific things when I am in a constant state of bleh. For the most part I do avoid all of those things, though I do struggle to totally eliminate potatoes but I should. I will definitely look into the bone broth though thank you. Of course it could always be worse. The hardest part is that I've got a good amount of other issues with my health that happened to manifest at the same time as celiac so I am just having a very bad year health wise. Just hoping for better. I keep looking back and being shocked at how many months I have felt this way and it feels like I'll be like this forever! Anyway, I was just very discouraged considering my doctor thinks I should be a okay by now.

thank you

[cyclinglady]

Hang in there!  It takes most of us many months if not a few years to feel well.  I felt so much better when I approached the one year mark and even better by year two.  You just need more time to heal as it sonds like you have the gluten-free diet down.  

More hugs!  

[fergusminto]

Do not despair! You are not the only one in the US with this problem and believe me there are plenty of us in the UK.

I was diagnosed 6 years ago and immediately went onto a gluten-free diet. However, it sone became obvious to me at least (not necessarily to Doctors) that there is much more to celiac disease than just a gluten problem. It has taken me a long time to realise that I am also intolerant to Oats, all Dairy, Eggs, Soya (flthy stuff) and now sulphites found in wines and most other low alcohol drinks. Just recently I have my doubts about alcohol in general but that is a case still to be proven. My advice is cook everything from scratch - no processed meals - and keep a diary for a few weeks on what you are eating and any reactions.

 

Good luck.

 

[2lonedogs]

For me, it is not just gluten... My whole autoimmune system is messed up and to make a long story short I am only eating fresh meats and only certain vegetables... Notably lettuce and tomatoes. Your gas and bloating is a sign of food intolerance and should help you determine your other intolerances. Some of my non-gluten bad list items: dairy, soy, nuts, grains, (especially corn), and I haven't found a fruit that is symptom free. Checking your weight every day with a digital scale will aid in diagnosing intolerance also... A sudden weight gain of 2-3 lbs overnight is a sure sign of intolerance- water retention. Muscle tightness and joint pain are other symptoms besides the classic pain in the gut and diarrhea. Trouble in concentrating for me was attributable to chemicals... Artificial sweeteners, preservatives, baking soda and powder, etc. Fresh veggies and meats are the safest way to go.  I've been at this for about 2 years and still have to watch everything I eat... Good news- I feel so much better, lots of energy, no brain fog, no moodiness and much better sleeping. You have become like me a human test subjectGood luck!