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zebrapig

Illnesses With Celiac Like Symptoms

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Hello everyone. I am new on here and am in need of some advice. I am 18, I am not diagnosed with celiac disease and have actually tested negative for it a year or two ago. These are my symptoms that I've had for almost a 11 years: after eating anything like pasta, bread, beer, cookies I feel terrible. I get terrible headaches and I feel almost out of body. my abdomen extends dramatically almost like I am pregnant and am in serious pain for days. I get so nauseous that i vomit and have suffered from diarrhea for as long as I can remember with periods of constipation. I was a vegan for seven years and just recently switched back to lacto-ovo vegetarian (which has helped me gain weight)

Another symptom is sudden weight loss. I was in the hospital for unrelated stuff for 2 weeks and then when I was discharged I ate mainly garlic bread, pasta, and fruits and veggies. I dropped from 135 lbs down to 76 lbs in a few months. And please listen when I say I do not have an eating disorder because as soon as people hear how sudden it was they have made up their minds that I'm anorexic and this is all my fault. I really don't and I know I'm too skinny. Just recently I have switched to a very strict gluten free vegetarian diet (mainly eggs, cheese, beans, milk, juice, veggies, fruits, quinoa, rice ect.) and have gone up to 98 lbs.

Like i said my celiac blood test came back negative but I was not able to get an appointment with a gastroenterologist because the only one in my old town was the father of a kid who bullied me in high school and he refused to treat me. I am unable to go to the doctor in my new city until december(ish) when I get health insurance and I have very little money to afford a doctor. I feel okay now but when I do slip up I am in agony for days and am out of work.

Are there any other illnesses or reasons that this could be happening that is not celiac? I really miss my favorite foods and being a healthy weight and I am tired of being such a burden to my family.

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Hugs!!!!! This does sound like Celiac. I also test negative on the blood work because of IGA deficiancy. If you really want a diagnosis then you would have to get a endoscopy and there is no gurentee that will come back positive. Plus you would have to stay on gluten. You could also just go gluten free and you would know if about a week or two. The only other thing I could think of would be diabetes.

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I've been tested for diabetes and they said my blood sugar was low, although I do believe it's because I was so freaked about getting sick after eating that I just drank liquids most of the time.

I've been extremely strict about being gluten free ever since I moved (Aug 16, 2012) and feel so much better. I still have some tummy trouble every now and then but that's usually only after eating with other people where I honestly feel pressured to eat "normal" so people would stop calling me anorexic. I have so much more energy and am happier now that I'm strict about it but it seems like if I slip and eat even a tiny bit of something that contains wheat or gluten then it makes me feel sick and I feel guilty because I ruined it.

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You have nothing to feel guilty about. It takes time to learn the gluten free diet. You will learn to stand up to your friends and they will understand once your health improves. It sounds like you have a severe case of celiac.

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The good news is you have figured out what is going on with your body. The bad news is you won't likely be able to get diagnosed with celiac unless you go back on gluten for a while. And it sounds like that will make you very ill. IMHO your best route is to simply stay gluten free. There are no other illnesses that I know of that would cause the symptoms you get when you consume gluten. If you had something other than a gluten issue your symptoms would not resolve on the diet.

We all make mistakes at times, this is especially the case when we are new to the diet. Don't feel bad about it just do your best not to let it happen again. You will continue to gain your weight back so soon the anorexia accusations should stop. Don't let anyone bully you into eating gluten. Be prepared with gluten free snacks when you are going to be out of the house for a while so if your friends decide to stop someplace to eat that doesn't have anything safe for you to consume you won't be so hungrey you get tempted to take a chance.

Read as much as you can here and ask any other question you have a need to ask.

I hope you continue to improve and welcome to the board.

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Yes there are other diseases/disorders that present with the same symptoms as Celiac.

H. Ployri

parasites

hernia

the list is quite long and I can't remember the top 8 most likely diagnoses.

(I don't count IBS as a diagnoses)

Eosinophilic disorders can be diagnosed anywhere in the GI track and also has a food "trigger" (not an actual allergy). Some individuals have tracked gluten as a "trigger for their immune system to produce eosinophils which attack and damage normal tissue.

My daughter was diagnosed with probable Celiac when she was 17 months old and

Eosinophilic Esophagitus when she was 6 years old. Her onset of symptoms was about the same (please consider the difference from a non-verbal 7 - 17 months of age to a verbal 6 year old)

"D"

vomitting

tired with headache

dark circles under the eyes

no weight gain(actual weight loss)

a belly that would just "blow up" eating eating some foods

surprising enough a cycle of UTI's/ constipation (even with all that "D" just can't figure that out ~trying to account for the gluten-free diet, and picky eating before diagnoses)

So if problems persist you should consider testing. Here is the hard part, you will have to eat gluten to get (hopefully) the correct diagnoses. Gluten could be "triggering" Celiac, gluten intolerance, or Eosinophilic disorders, or possibly a system that is excerbated by gluten.

There is a known connection between Eosinophilic Esophagitus and Celiac. It is a reccomendation for all new EE diagnosed patients to have screening for Celiac.

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Testing negative a year or two ago does not mean you don't have Celiac Disease now. It can be triggered at any time. Your symptoms sure sound like celiac or gluten intolerance.

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Hi ZebraPig,

There is a newly identified condition they are calling non-celiac wheat sensitivity that can cause symptoms like celiac does. It can't be detected with the celiac disease tests, as it is not the same immune repsonse but a different one. So right now there is no dignostic process for it. And not much is known about it except that it causes celiac-like symptoms and involves the innate immune system.. People in the celiac community have been talking about a condition called NCGI (non-celiac gluten sensitivty ) for years, and this reaserch shows that something like it exists.

http://Non celiac wh...ists/Page1.html

Below are some tips for starting the gluten-free diet. It sounds like you are ok with dairy so that one isn't needed. Often people with untreated celiac can't digest dairy because the autoimune attack destroys the villi in the small instestine. Those villi make an enzyme that digests dairy sugar (lactose). The villi also absorb nutrients like vitamins and minerals, amino acids and sugars. With damaged vili it is hard to abosrb nutrients and people tend to lose weight or not gain weight even if they eat a lot of food. That is called malabsorbtion. Strangely some people gain weight with celiac. The small intestine is around 22 feet long, so there is a lot of tissue there to heal.

I think you have the right idea. Eating lots of protein is important with celiac. Your body needs protein to rebuild and heal the damage in your gut. So you can then absorb nutrients properly. Celiacs tend to be deficient in the fat soluble vitamins like A, E, D, and K. Getting a test done for your vitamin and mineral levels is good so you know what to supplement.

Avacadoes are high in protein. Peanut butter and alomnds are also. I encourage you to think about adding meat to your diet also, and avoiding soy. Soy is not good for the digestive system, and some vegetarians eat a lot of it. Can you eat fish?

From About.com

http://lowcarbdiets.about.com/od/whattoeat/a/highproteinfood.htm

Nuts and Seeds

  • Peanut butter, 2 Tablespoons - 8 grams protein
  • Almonds, ¼ cup – 8 grams
  • Peanuts, ¼ cup – 9 grams
  • Cashews, ¼ cup – 5 grams
  • Pecans, ¼ cup – 2.5 grams
  • Sunflower seeds, ¼ cup – 6 grams
  • Pumpkin seeds, ¼ cup – 8 grams
  • Flax seeds – ¼ cup – 8 grams

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.

Get your vitamin/mineral levels tested also.

Don't eat in restaurants

Eat only whole foods not processed foods.

Eat only food you cook yourself, think simple foods, not gourmet meals.

Take probiotics.

Take gluten-free vitamins.

Take digestive enzymes.

Avoid dairy. *** Skip this one

Avoid sugars and starchy foods.

Avoid alcohol.

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I strongly agree with 'Ravenwood' - you are improving and gaining weight while gluten-free :)

As you gain weight and you are consistent with staying gluten-free your friends and family will see that you are correct. Do make sure you carry gluten-free snacks when out - sometimes "friends" will point out the times you eat gluten as evidence that you can - not very friendly, but does happen.

Consider keeping a food/ symptom journal (including bowel changes) and take pictures of yourself at each 5 pound weight gain - these things will be very helpful when you eventually find a new gastro.

Hang in there and let us know if you have any questions.

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