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Still Sick


chrissygirlca

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chrissygirlca Apprentice

Hi I'm Christine I'm 26 and have been diagnosed with celiac since October. I'm 5'6 n weigh 95lbs! In the beginning I found out I was still getting gluten not by chance. I completely eliminated gluten and was still getting sick. I stopped dairy same result. Stopped sugar eggs honey citrus nuts all these things made me have pain or gas or d. I tried blueberries rasberries in a bowl with quinoaot pain . Nuts give me the d most fruits and some veggies make me upset I get plenty gas all day long. Embrassed to go out for long ppl look at me funny. All I eat is rice n meat or potatoes n meat n veggies. Mostly cucumber n green peppers n lettuce. I got the pain down a lot but still gas. Lactaid does not work for me. Even when I eat c d g w n free still react n certain gluten free things give me pain. But I try not to eat processed stuff. Quinoa by itself is ok I think I eat it a lot but not sure what to eat with it. Breakfast n meals are a big problem and I'm even carefull with pots pans and spoons. My doc only referrs diabetics to dieaticians n they r expensive! I'm so embrassed to go out ppl at my old work make fun of me cause of the smell and I'm soooo thin all bones :(


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starrytrekchic Apprentice

*hugs*

Don't let celiac isolate you! It's not your fault!

Have you checked everything to make sure it's not being cross-contaminated in factory? Things like nuts can be particularly problematic--lots of trail mixes and nuts are processed on the same equipment as wheat.

Has your doctor checked for other problems that might be causing the gas? Like bacterial infections? You may need to find out if there's anything else wrong.

I'm worried that your diet is so limited right now. How are you vitamin/mineral levels? You might need supplements. Have you checked your personal products for wheat? You might be getting some there, like with hand lotion.

Something like steroid treatments shouldn't be out of consideration either, not with you being that thin. It might help calm your immune system down enough for you to gain some weight back. Maybe someone else will have some suggestions to help you gain weight.

rosetapper23 Explorer

From other postings on this forum, you seem to be having the types of problems that people with candida issues have. Perhaps someone who has experience with candida will respond to your question--something really needs to be done quickly in your case.

BTW, have you also eliminated soy and iodine? Many of us with celiac are very sensitive to these. Iodized salt is oftentimes added to nuts, which is why I'm mentioning the iodine connection.

Kelly777 Newbie

I've been gluten free since September 25th and like you I still have problems. Yesterday, I didn't take my Lactaid soon enough when eating a toasted cheese and tomato soup. Both had milk. For quite awhile I made the mistake of not taking enough Lactaid to do the trick. Last weekend we had the same meal and I took the Lactaid prior to eating and I didn't have a problem. I am having issues with bacterial overgrowth and I cannot get anybody to listen to me nor treat me. Honestly it sounds like that is what is going on with you. According to what I have read it takes quite awhile for the small bowel to digest fat well. I still have problems and Canola oil is the worst. It is a pesticide and it reeks havoc on my small intestine. I started keeping a food diary and I have found that I tend to have problems if I eat sweets. I think that has to do with the overgrowth. I'm not going to have the colonoscopy and endoscopy done until May when my genetic testing comes back for this really rare blood disease I tested positive for in 1982. The hematologist believes I never did have that disease and I have another autoimmune disease and she believes that because usually if you have one autoimmune disease you have another one piggybacked. The other thing is you might be vitamin deficient. This doctor ran a panel on me to determine if that is the case. Throughout my life I have been diagnosed with pernicious anemia and low magnesium so I could be having problems with that. Also this doctor told me that it takes time for the villi to heal and for each person it is different. It's not like other diseases where you take a course of medications and you are healed within 10-14 days or even a month. I think we don't get quick miracle cures but we get baby steps where we feel better and better.

Evangeline Explorer

Try eliminating all soy, corn and legumes. I have two Celiac friends who discovered they could not eat these foods or they would have horrible gas, bloating, etc. If you feel like your diet is becoming too limited, eat squash and yams/sweet potatoes.

chrissygirlca Apprentice

U guys are all so helpful I feel like I've been going through hell I found out my dads been marinating meat in gluten free sauces with vinigar n peppers and sapices which I know I can't tolerate spices yet I know vweegies give gas but idk what kind of meals I should be eating I wanna eat only natural but I feel like I can't eat anythin oh ya I completly forgot about gum? Maybe that's why too? I got the endoscopy n colon done n blood tests they would have known it was candidia? But I have had wheat for a while without knowing and was binging on sugar for like a month after cause my cravings were bad but not worth the pain so I stopped. Maybe that made it worse. I juat used to get depressed and crave it. I'm gonna stck with the all natural no soy was gonna try tofu I guess that's out. How do u get nutrition without veggies and fruit I kno u need balanced ph. Thank you for all your help I really appreciate it. I feel like no one understands :(

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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
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    • 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
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