I Am Really Need Help With My Symptoms

[laughingchicklol]

I am sixteen and was diagnosed with Celiac about two months ago and went on a gluten free diet since they told us. I was having bad problems like extreme weight loss, severe heart burn...etc. so my doctor finally set me up for an upper and lower GI and took biopys. It was celiac, the biopys was positive even after a negative blood test. When they showed us the pictures they got, I could unmistakably see where the problem area was. In the duodenum right outside the stomach, the walls were completely bumpy and smooth, and I don't mean small bumps I mean large bumps, it looked almost like the texture of bubblerap. So now after two months my health is horrible. My weight continues to drop( I was 95 pounds when I was diagnosed and I am about 90 now, for being 5'4, that is way too skinny),I am continously nausious to the point I spend almost every day hovering around a toilet just incase I throw up, I still get heart burn sometime(when I do it is bad), I don't have a period,my hair is falling out, nails are peeling off, I have rashes in weird places, my bones are really fragile(I broke my toe six months ago and it is still healing, I dropped a paperback book on it and a peice of bone chipped off). And I have absolutely no stanama or energy, walking to the bathroom from my classroom can make me gasp for air, and the constant dizzyness doesn't help. I have passed out three times so far, my class was taking a walk around the school track to get the blood pumping before a test and I passed out after 1/8 of a mile. Having them call 911 for me did wonders for my reputation for the school sicky.

I really want to get better. I am pretty sure I am completely gluten free. I have my own toaster, own small oven, a small refrigerator jut for me, and at lunch at school I eat in the health room so I am not around other kids eating stuff with gluten. A few people say it is because of lactose or milk but I haven't drank milk since kindergarden because I think it tastes naste and it makes me gag. I know two month is not a long time to be on the diet but I would think I would have some form of relief. And I don't have time on my side, I am only two months into school and am one absence away from being held back, as a student who has a 4.4 GPA, I will never let that happen.

What can I do to get better, even feeling like total @!$@ I still eat about 3,000 a day. What would be some possible things my doctor might do?

I am very frausterated because all my parents and doctor care about is my constipation,I don't get diaherra, only very bad constipation (I go #2 about once a week if I am lucky)

Thanks

Any thoughts would be nice...sorry I know my spelling is horrible.

[2sweetico]

i know exactly how you feel! I was in the same position just a few months ago. I'm 15 and I went from 130 to 84lbs in a short time. Everybody thought I had an eating disorder and I had the same symtoms as you too. I was also eating about 3,000 cals a day! A few months ago, I actually blew up like a balloon and now look almost pregnant. I've been trying to drop some weight. I wish I could just find a place in the middle! lol...but all I can tell you is take some probiotics. That is the very first thing you lose when you go gluten free and they keep the good bacteria in your system. Are you taking any multivitamins? Any medications or supplements? Some of those might have some hidden gluten ingredients. Luckily my school's principal worked with me. It's a very serious thing and none of my teachers understood why I was in the restroom so much. Almost all of my teachers failed me, but my principal went back and gave me all 95s instead since I've always been an A student. A lactose intolerance normally doesnt cause you to lose weight. It's probably good for you to eat some cheese or ice cream and get some healthy fat into your diet. Don't force it too much. Some people are naturally thinner and my body went into complete shock.

email me if you have any other questions or if you just wanna talk:)

not many kids our age are going through this and it's nice to know im not alone!

jazzybabe513@aim.com

[MelindaLee]

I am not all that familiar with all of this...but what I have heard many of the very intelligent informed people here say is that milk/lactose can interfer with the healing of your intestines. I am sure some of them will chime in. They are much more experienced with this. I am one of the fortunate ones who found out on a fluke and didn't have your horrible symptoms. Hang in there. I would suggest your mom or dad look through this forum as well. They need to help you with the cooking and such. Avoid as much processed food as you can so your body can heal. Good Luck

[GFinDC]

Here is a blog post about casein intolerance.

Open Original Shared Link

here is a condition called called casein mediated enteropathy, where casein (a milk protein) causes an auto-immune reaction like celiac. Some of us (celiacs) on this board can't do dairy when new to the gluten-free diet, but then heal enough that our villi start producing lactase enzyme again. The lactase enzyme disgest the milk sugar (lactose). Those people can sometimes then eat dairy again. Other people have an intolerance to the milk protein (casein) and can't eat dairy even after healing.

Soy is another big problem for some of us and can cause lot of symptoms. Some people also react to food colorings and food preservatives.

Generally the advice given around here for people starting the gluten-free diet is to stick with whole foods and avoid all processed foods for a few months. No boxes of this or that, or candy (unless you make it yourself), or anything with multiple ingredients listed, especially if they sound like a chemist invented the names.

Cooking all your food from scratch lets you know exactly what is going in your body. So if you keep track in a food journal of your reactions, and limit the number of different food items you eat each day, you can sometimes learn what foods are bothering you. You can read about different approached to elimination diets on this site by searching in the top left box.

[gf-soph]

You poor thing- you've been so ill, it sounds like you are doing so well to keep going as well as you are! There are lots of people here who know a lot about what you are going through, so you will probably get quite a few different suggestions to look in to.

One thing you didn't mention is whether you have had blood tests to check the levels of your nutrients? With your symptoms and the damage to your intestines, it's very likely that you haven't been able to absorb some of the important nutrients in your food for a long time.

At a minimum, you should have checked - iron (full iron panel, make sure they check your ferratin which is your stored iron), B12, folate, calcium, vitamin D, and others have mentioned magnesium, B6 and potassium. A thyroid panel would probably be a good idea as well, as thyroid problems are quite common for us, and affect your general health a lot.

I have had very low iron and B12, and slightly low D for a couple of years. They can all cause terrible exhaustion, and several of the symptoms you mentioned.

The slow bone healing is concerning, you should ask to get a bone density test to see if you have weak bones from a lack of calcium. This is just a special type of x-ray with no preparation needed. This is especially important to find out as if it is low you will be at risk of osteoporosis down the track if you don't get the bone density back up. There are other sources of calcium if you can't tolerate dairy, but you will need to make sure you are getting enough in your diet.

I don't mean to scare you, but when you have been so ill for so long I would be extremely surprised if you don't have some significant deficiencies. The good news is that when you know about them you can then target these nutrients, and it could help you to feel a lot better. It could still take quite a while to heal from the damage done by your celiac, but knowing about any deficiencies is really important at this stage.

Hope you find some answers and start feeling better soon

Sophie

[T.H.]

Oh hon, so sorry that you are so ill still!

I would second gf_soph: if the docs haven't checked you for vitamin deficiencies, they really, really need to. If the levels are low and you take supplements, then they need to check you again in a month to see how well you are absorbing, so they will know if they need to up the dosage to compensate. My doctor was mentioning that some celiacs can need much, much higher doses of vitamins to deal with the poor absorption, but some of these vitamins are dangerous if you absorb too much, so you need a doctor to monitor you as you heal and start absorbing more.

Also, have you been tested for any other food allergies? If you can't get anyone to formally test, it might be worth while to keep track of what you eat, and when you feel good/bad, and see if you can find a pattern (often can be delayed by up to a day or two)

And honestly, the other thing that comes to mind is that there is a good chance you are still getting enough gluten to affect YOU. Not everyone has the same level of sensitivity. Some can buy gluten free foods and eat them just fine, but gluten-free foods STILL have gluten. They just have less than a certain amount, which most celiacs are okay with. But not all celiacs are.

If you eat any processed gluten free foods, it might be a good idea to drop those flat for a while. That's what I had to do. I have only been gluten free a year, but suffered many of the same symptoms. I lost 40-50 pounds the first 2 months or so, then another 20 over the next four months. My hair was falling out, my skin was awful, I felt terrible (and I get constipation when glutened, which tracks with your symptoms, yeah?)

What we discovered in my case was that 1) I had other foods I had problems with and 2) I am really, really sensitive to gluten.

With the other foods, some have been diagnosed as allergies, once I was tested, and a couple simply make me very ill when I eat them, even though they don't test as an allergy. my doc has advised me to avoid them. He also said that as long as I ate them, they would delay my gut healing.

With the extreme sensitivity, I have had to be a gluten Nazi just to avoid gluten to the point that my body won't react. I can eat no processed food that is 'gluten free,' because I react to less that the proposed legal limit, unfortunately. Whole grains can even be contaminated (they can call themselves gluten free legally because they are gluten free in nature. They don't have to be tested to see if the processing has contaminated them, however, and independent groups have done tests and found many of them ARE contaminated. Some of the grains/flours that had contamination - the study didn't say which brands, unfortunately - were soy flour, millet and millet flour, rice flour, and buckwheat flour. ). I can have very few whole grains without getting sick, as a result.

I have had to drop my diet to plain veggies and fruits, 2 grains (amaranth and quinoa), meat that is made in factories that don't process anything with gluten. I've started a garden to ensure I have totally gluten free veggies and herbs. No pre-made sauces, gluten-free pastas, dried spices, salad dressings, vinegars, crackers, gluten-free breads, nothin'. Even oils have caused me problems (processed on the same line as wheat germ oil, for example). I have a special plate, utensils, and pan because we couldn't keep mine safe all the time.

Not everyone is this sensitive obviously, or gluten-free foods wouldn't be popular. But if you are, then following the typical gluten-free route, especially if your doc is not real celiac knowledgeable, won't get you better.

That doesn't have to be it, of course, but it's probably worth pursuing. Just drop everything that is processed, at all, if you can, even oils and tea (some teas have barley so can contaminate the other teas processed in the same factory). Might even drop iodized salt. Sea salt will do, if nothing is added to keep it from caking up, although you'll want to get an iodine supplement (I have a liquid one with only one ingredient) if you drop the salt. It's a LOT more work to cook this way, but for some of us, it's the only way to stay safe with the level of processing in the modern world of foods. And if you drop all of this and start to feel better, then you can start to test out what you can have, and what's safe, and exactly how sensitive you are. But if you are still having trouble, I would cut the processed foods out, chop chop.

A few other things that might be affecting you?

1. Do you have gluten free cosmetics, shampoos, soaps, toothpaste? Anything that touches your lips (rinsing off shampoo, for example), or touches something that touches your lips (soap touching your plate, if it wasn't rinsed off quite enough), can get you. A used book touching where you put your food, even.

2. A small percentage of celiacs react to oats (even gluten-free ones) or quinoa just like they'd react to wheat, rye and barley. If you are eating these grains, you might want to drop them and see if it helps.

3. If there is construction near you, many construction materials utilize gluten and it can get into the air around you. Or if there is baking with flour near you, that can get into the air, inhaled, and head right down your throat to gluten you as well.

4. Do you have dogs or cats? If they have gluten food and are licking you, I've heard of people getting glutened that way!

5. Non gluten issues: have they tested your for Crohn's disease or fructose malabsorption? You might want to investigate these on your own and see if any of the symptoms match up with what you've gone through.

Wishing you the best of luck in feeling better! Please let us know how you are doing!

[winstonterr]

Hi,

There is no cure for celiac disease. The treatment of celiac disease is a gluten free diet.Avoid oats. Some patients with celiac disease can tolerate oats in the diet. But long-term safety of oats in celiac disease patients is unknown. Also some oat preparations can be contaminated with wheat. Thus, it is probably best to avoid oats at least during the initial treatment with a gluten free diet. Once disease remission is achieved with a strict gluten free diet, small quantities of oats can be reintroduced into the diet under medical supervision.

[mushroom]

A couple of things might help. No.1 is a good digestive enzyme because the pancreas is affected, gets lazy and stops putting out enough enzymes to digest our food. No.2, a good probiotic to help heal your leaky gut. Ask for these at a good health food store. I would not have survived without them initially. Here's to feeling better

[dilettantesteph]

I wasn't able to heal until I cut out processed foods, especially those containing grains. Some of us are more sensitive to trace gluten than others. I am very sensitive. It is too soon after only two months to know. It still might help you to heal to eat a whole foods diet consisting of meat and produce. Then when you are feeling better you can try adding other foods back in and see if you can tolerate them.

[Looking for answers]

I agree with the other posters that you need to get your vitamin and mineral levels checked. It also sounds like you could have problems with your thyroid. Have them run a complete thyroid panel including an antibody panel.

[Reba32]

have you had your thyroid tested?

Celiac disease often goes hand in hand with thyroid auto-immune diseases. Grave's Disease (hyper-thyroid) will cause all of the symptoms you are experiencing.

It may not be food related at all, I strongly urge you to see an endocrinologist asap. Grave's disease can be very dangerous.

[mark25]

Hi everyone. I'm 21 years old and I was diagnosed with celiac over a year ago. I have very similar symptoms, I still feel chronic nausea every morning and I throw up more days than not. I wake up every morning absolutely miserable, I feel like someone was holding a pillow over my head for most the night. I haven't been able to breathe out of my right nostril very well for a long time now. I notice that I feel better when I eat gluten free, but I still feel very uncomfortable after eating most meals. I struggle very hard to stay motivated because whenever I start to feel a little better I end up getting sicker than ever. My quality of life has decreased quite a bit since going gluten free and it is very hard to stay motivated. I have struggled with anxiety and depression for many years before finding out I had celiac and I was told I would feel better after eating the right foods and taking vitamin d for a deficiency. They recommended taking 1000ius and gave me acid reflux medication that I have tried over and over and has failed to work. The vitamins make me feel like poop even though they are gluten free and so do the reflux meds. I take Xanax for my anxiety but mainly just to make me feel a little bit better about my situation. I also smoke marijuana and have found that it is the ONLY way to make my nausea feel a little bit better. I know that marijuana is not a cure, its just a mask.. but if it makes me feel even a LITTLE bit better than I don't care what anyone says. I just want to feel alright for one day. I had a brief period where I was drinking myself to sleep every night because I work over 40 hours a week and come home to a crappy apartment. Since I was eating fast food or junk food 2 times a day during my first years of college before I had celiac I feel like I ruined my life. Now the only place I could find a job is in a Cigar Store where I have to sit in a horrible not very well ventilated smokey room all day. I hate my life.. I hate waking up everyday. The only time I was doing well with celiac was when I had a girlfriend that was supportive, but my sickness and alcohol abuse ruined that relationship. Now I'm completely alone. I have no interaction with anyone even close to my age. I work all day and feel like my health is 3-4 steps behind. I don't care about myself anymore. I just want the pain to go away... Possible other illness's I might have: My dad has Sleep Apnea, My mom has thyroid issues, my sister (32) also has celiac but was able to control her acid reflux and is feeling a lot better. I want to do something with my life, I want to be successful.. but I'm at the point where I don't want to wake up anymore. Please help

[ravenwoodglass]

Hi everyone. I'm 21 years old and I was diagnosed with celiac over a year ago. I have very similar symptoms, I still feel chronic nausea every morning and I throw up more days than not. I wake up every morning absolutely miserable, I feel like someone was holding a pillow over my head for most the night. I haven't been able to breathe out of my right nostril very well for a long time now. I notice that I feel better when I eat gluten free, but I still feel very uncomfortable after eating most meals. I struggle very hard to stay motivated because whenever I start to feel a little better I end up getting sicker than ever. My quality of life has decreased quite a bit since going gluten free and it is very hard to stay motivated. I have struggled with anxiety and depression for many years before finding out I had celiac and I was told I would feel better after eating the right foods and taking vitamin d for a deficiency. They recommended taking 1000ius and gave me acid reflux medication that I have tried over and over and has failed to work. The vitamins make me feel like poop even though they are gluten free and so do the reflux meds. I take Xanax for my anxiety but mainly just to make me feel a little bit better about my situation. I also smoke marijuana and have found that it is the ONLY way to make my nausea feel a little bit better. I know that marijuana is not a cure, its just a mask.. but if it makes me feel even a LITTLE bit better than I don't care what anyone says. I just want to feel alright for one day. I had a brief period where I was drinking myself to sleep every night because I work over 40 hours a week and come home to a crappy apartment. Since I was eating fast food or junk food 2 times a day during my first years of college before I had celiac I feel like I ruined my life. Now the only place I could find a job is in a Cigar Store where I have to sit in a horrible not very well ventilated smokey room all day. I hate my life.. I hate waking up everyday. The only time I was doing well with celiac was when I had a girlfriend that was supportive, but my sickness and alcohol abuse ruined that relationship. Now I'm completely alone. I have no interaction with anyone even close to my age. I work all day and feel like my health is 3-4 steps behind. I don't care about myself anymore. I just want the pain to go away... Possible other illness's I might have: My dad has Sleep Apnea, My mom has thyroid issues, my sister (32) also has celiac but was able to control her acid reflux and is feeling a lot better. I want to do something with my life, I want to be successful.. but I'm at the point where I don't want to wake up anymore. Please help

Welcome to the board you will find a lot of very supportive people here. The first question I have is are you taking name brand Xanax or a generic? The name brand is not gluten free so that could cause issues for you. What do you typically eat? Are you going with mostly unprocessed naturally gluten free food?

[mark25]

yea mainly chicken, potatoes, and corn. Not many fruits because the acid really bothers my GERD, and vegetables whenever I can. I never eat breakfast due to morning nausea. So i normally don't begin a meal until 12:30. My mom and dad are very supportive they just are confused as I am. Since so many of my problems could be one thing or another it drives my anxiety crazy. I take the generic Alprozolam, which is gluten free and it is the lowest possible dose .25 and just kinda makes me tired. I like Red Bridge beer, and I drink Jack Daniels Whiskey, Ciroc Vodka, Or Canadian Club Whiskey most of the time. I started up again taking Vitamin D, even tho it makes me feel drugged up. I started smoking marijuana around 9th grade when I noticed how much I could eat after smoking. It would make my morning nausea go away and help me eat lunch. But at that time I was a lot more active. I played football and basketball and always had more energy. Now I can barely run around the block. Luckily in my location we do have a few local Pizza places that make great gluten free pizza. We have Buddy's Pizza, Boston's Gourmet Pizza, and even a local place that delivers gluten free pizza up to 3 in the morning. I also eat gluten-free Sweet and Sour chicken from Pei Wei once in a while. I have not been perfect in my diet, I have had many accidental glutenings from even gluten-free places. Other than that.. I eat white rice with meat n gluten-free spaghetti sauce, or gluten-free noodles. My parents help with most of the cooking. As being a 21 year old male I guess I never thought I'd have to cook so much at my age.

[tarnalberry]

With as much as you're eating out and pre-prepared foods, you're probably getting a lot of contamination. The autoimmune response in the gut can self-sustain itself for up to two weeks, so even if you "only" get glutened every other week, it's as though you're not eating gluten free at all. I would *strongly* encourage you to ditch the restaurants and stick to naturally gluten free foods rather than substitutes. You may also find that working a cigar shop is a MAJOR contributor to the sinus problems you mentioned.

[Dixiebell]

Hi! You said your Vit D was low. My Dr. had me taking a mega dose(50,000iu iu a wk) for two months until my levels got in the normal range. Now I take 3,000 iu of D a day and I think I finally found the dose that is working for me. Can you take fish oil? That has helped me too. What about B vitamins? I also take a B complex daily.

It felt like I would never come out of my funk but one day I woke up and I felt so much better. So at least there are more good days than bad ones now.

Now I know not everyone is the same but when I have too much dairy my nose gets really stuffy. It could be something to try. I know I probably shouldn't give up this info but when I was quite a bit younger, I used to 'indulge' quite often, everyday as a matter of fact, and I would start getting so tired during the day that I had to cut way back and eventually stop.

I agree with stopping eating out, just take leftovers from home.

Are you still on your parents health ins or do you have your own. You might want to get your thyroid checked too.

Please don't give up. We can be here for you.