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Can Someone Help Me Sort Out What's What?


DarkIvy

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DarkIvy Explorer

Long story short, I've had the semester from erm, down south. My financial aid was cut (thanks, credit crunch!) and I ended up working full time to try and pay bills WHILE trying to go to school full time. In the end stress and depression and anxiety caught up with me and I've withdrawn from all of my classes to focus on work.

I think some of the emotional issues are making me worse.

It hasn't exactly been easy to be as strict as I should about gluten, either. I was rushing to get everything done all the time, and I'd slip up at restaurants or not read a label closely enough. Depression and anxiety have been some of my more noticeable symptoms. It turns into a vicious cycle. Also, I'm very prone to catching colds and flus. I get just about everything that goes around, and it's always worse with stress and/or gluten.

My health is back in the toilet.

I'm so frustrated because last Saturday, I got glutened at a restaurant that I've never had problems with. My parents came to visit me and I was so excited... and BAM. Glutened. The very next day I started to come down with some kind of cold. Monday I was too ill to get out of bed. I had the big D, runny/stuffy nose, nausea, fever, chills, fatigue. I was suffering with both the effects of gluten AND whatever virus I managed to catch. Tuesday was another day spend in bed, and Wednesday was only just a bit better. I only forced myself out of bed to go to work that night. Thursday was more of the same, and so was today.

Two weeks ago I was home again because of similar reasons. It just drags on. I've spent the better part of this entire semester trying to muddle through all of my various symptoms and I just want so badly to feel better again.

Right now my stomach is gurgling and I've had D three or four times today already. I have no energy. I'm loosing weight, everyone is commenting on how skinny I'm getting (not good). I don't want to see another doctor. I feel like every time I go, they just say "oh, it's a virus, we can't help, get rest and drink fluids."

Another thing is that I found out that my birth control pills may not be gluten free. Last week I was on the placebo, which I never actually take, and when I started up my new pack, I noticed more stomach pain. The company who makes it is Watson, and the pharmacist I talked to said they don't even know if their products are gluten free or not. I don't know how to find a generic version of the kind of pill I take that IS gluten free, because this is the only pill I've ever been on that has even remotely worked for me. Where do I start with that?! I think in the meantime, I'll stop taking it until I find something that will work. I can't risk getting worse right now.

The point is I'm a big mess. I don't know what's virus, what's depression and burn out, what's celiac, and what's making me worse. I don't know what I should eat, either. I have almost no appetite for anything and I'm not a big meat eater. I need to be able to eat something that will help me get enough protein and gain back some of this weight, but I think I need to lay off the dairy temporarily and soy makes me feel worse, too. Nothing sounds good. Everything that I do like eating makes me feel worse when I've been glutened.

Gah, sorry for this big rant. I just want to get healthy again and I don't even know where to start. I'd love some suggestions and support right now.

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frec Contributor

I am so sorry! I hope you feel better soon.

I agree that you should quit dairy for a while. Try a challenge sometime when you are more rested and healthy. If you have celiac disease the intestinal damage may have destroyed your ability to digest dairy. The enzymes are made in the lining of your small intestine. Some people never get the enzymes back even after they heal. Even if that is not the case dairy is hard to digest and would be a good thing to give up until the diarrhea clears up. Many people who are gluten intolerant can't have soy either. I drink Almond Breeze and I like it better anyway.

Bananas would be a good idea. They have potassium and they are good for diarrhea. Your electrolytes are all messed up and that makes you tired. You know the BRAT diet for little kids with diarrhea: bananas, apples (I like applesauce), rice, and tea? Go really bland for a while, and try taking probiotics to re-establish a healthy flora in your intestine. Could you manage smoothies? I drink rice protein smoothies with almond milk, a banana, and a dollop of peanut butter--wonderful.

Last but not least you should be taking vitamin D3. It helps the immune system and depression/anxiety; I've struggled in both areas and have improved tremendously since going on 5000 IU of D3 a day. Celiacs especially tend to be low on it. You can get a blood test for it if you want to make sure.

Good luck.

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Mother of Jibril Enthusiast

Hi DarkIvy,

I'm so sorry for the mess you're in! What a vicious cycle.

I was at a really horrible place in my life two years ago, suffering from grief and severe depression... plus undiagnosed hypothyroidism and a vitamin D deficiency. It can feel SO hopeless :(

The most important thing I learned is to get my priorities straight and focus on what is really important (not what other people think is important)... for me that meant improving my mental and physical health and taking care of my kids. Even though I'm a tenure-track professor, I stopped writing for about six months and took a leave of absence from my job for about three months... right in the middle of the semester! My counselor had to talk me into it. I was SUCH a mess. I know the academic atmosphere says, "Just keep going... no matter how bad you feel, you can tough it out." But you know what... it's not worth it. In ten years nobody will care how long it took you to get through college. You don't have to go full-time to achieve your goals.

You did the right thing by cutting back on your responsibilities! In addition to simplifying your diet and taking vitamin D, try to do some fun things... read a book, watch a funny movie, buy some really delicious herbal tea, write in a journal, go to a sauna... whatever adds to your feelings of mental and physical health. You might also consider seeing a counselor or taking anti-depressants for a little while, just to get you over the worst part.

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JNBunnie1 Community Regular

I think those birth control pills may be contributing to your depressive feelings, regardless of gluten, though that's a major concern.I think the best thing for you now is to stay off them, though may I ask what you meant by those being the only ones that 'worked' for you?

My ther suggestion is try to find one of those full-spectrum lights you can use in your house during the day. They've definitely been shown to help lift mood.

I hope you feel better soon! Cream of rice cereal might be nice right now, very comforting without any dairy.

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DarkIvy Explorer

Thanks SO much for these suggestions. I am actually seeing a counselor right now, and she agreed that taking some time off from school is the best thing. So that's one good thing.

I've really just been trying to take it easy. I've been wanting to do a lot of things to make me feel better, like attend some free meditation classes, go consignment store shopping, write a new book... I'm kind of waiting for my body to heal a bit more, though. Honestly, I just haven't had the energy!

JNBunnie1,

I've been on various birth control pills since I was 16 to control my periods. I was getting them every two weeks along with some of the most horrible cramps. It tried this pill and that pill, went on the shot for a year, went back to regular pills... I had issues with some of the pills making me feel weird emotionally, or doing nothing at all for my periods. That's when my doctor suggested the Depo Provera shot. The first six months was fine, but toward the end of my third shot I had a two week long period and I started having major issues with anxiety and depression... oh and ACNE. I've always had clear skin, but I was a total pizza face and back there for a while. My fourth shot I bled for almost 6 weeks straight, and everything just got worse. At that point they put me on a pill (while the shot was still on my system) just to stop the bleeding. I tried a couple other kinds of pills after that, and neither of them did me any favors. I've been on Seasonale (or the generic version, once that came out) for about three years now. Side effects have been minimal compared to other pills I've tried and only having four periods a year has been nice because No pill I've tried has really helped me deal with the pain of being on a period, so simply cutting down on them seems to be the happy medium.

I've considered going off the pill but frankly, I'm not in a position where I really want to risk pregnancy right now. I've been on this particular pill for such a long time anyway that I think I would have noticed a more major change in side effects. My mood is very much under control for the most part. When I have been completely gluten free and not been under quite so much stress, I was fine.

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Mother of Jibril Enthusiast

Try starting with small things to pamper yourself... a nap, a hot shower, a cup of tea... maybe your boyfriend could rub your feet. Shopping and writing a book can be really fun, but those activities take energy.

Also... have you ever had your thyroid checked? That could partly explain the fatigue, depression, and heavy, irregular periods. I tried birth control pills a couple of times, but I could never get the breakthrough bleeding under control. Right now I have a Mirena IUD. Apparently, for most women it makes their periods very light or stops them completely... I was bleeding non-stop for the first six months! I finally went to my OB and she told me it's probably a hormonal imbalance related to my thyroid. Every time I get glutened I have a little bleeding <_< I have an appointment with a new GYN in April... I'm going to ask about it again.

The one thing I can say about thyroid tests: get a copy of your labs! "Normal" levels are between 0.3 and 3.0, but a lot of labs have outdated information. So... you could have a TSH of 3.5 and be told you're just fine, when really... you would feel better on a small dose of hormones.

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SGWhiskers Collaborator

Liz,

I'm sorry Celiac and the sometimes overwhelming demands of life are weighing you down. I went through the birth control pill finding game for years. I finally gave up. If your periods are more painful than a ibuprofin can take care of, you should look into getting a diagnosis of endometriosis. It is one of those diseases that behaves as an autoimmune disease. I went far too many years without my diagnosis. It is another one that can distroy fertility. Hormonal contraception helps protect fertility in endometriosis. I just couldn't handle the hormones due to depression and migraines. My doctors and I agreed I could take pain killers one day a month to manage my symptoms, knowing that I was risking my fertility. (In the end, I was told I would need an egg donor at the age of 31).

My point is that I think it is important for you to know that it is not normal for women to have very painful periods. Endometriosis is a cause of painful periods and can have serious consequences. I understand and agree with your decision to go off birth control for a while. There are other options out there for managing your symptoms. You may want to consider using those other options short term rather than for years to protect your fertility. There are some longer term hormonal options available. They just were not right for me. I realize I'm rambling. Today is my one day a month and I've got two vicoden floating around inside my brain.

In the short term, things my doctors have recommended and that have worked well for me are:

1) Ibuprofin 3-7 days before my period through and including the painful days of my period. The better I was about starting this in advance and taking it consistently, the less intense my periods were. It took me a long time to realize this, but it is consistently true.

2) RX Vicoden 1-2 days/month. I had to talk my OBGYN into this one. Eventually, I went to the University Hospital's Pain Management OBGYN clinic.

3) Surgery once the pain got too bad. I've had 2 and will have one more in 2 years.

Things I have found that help me control the pain on the worst days, in order from most to least effective:

1) Soaking in a hot bath. I regularly spend 6 hours in the tub on the one bad day.

2) Pads. Not tampons.

3) A 8-12 flannel bag of rice my mom sewed for me. Microwaved 2 minutes.

4) A strong vibrating massager on my lower back/upper glutes.

5) Distraction: A phone call with a friend. A chick flick.

6) Therma Care brand heat wraps (They are like instant hand warmers you wear in the front of your undies). I do this if I have to go out. You find them in the maxi isle. They also make ones for backs and knees that you might find in the ibuprofin or ace bandage isle of the drug store.

7) Stretching my lower back and legs. My favorite is to take my knee and pull it toward my opposite shoulder. Sometimes pulling that ankle up helps too.

8) Menthol/mint/Capsaicin rubs on my belly. It is stinky as can be, but Vicks vaporub does a little to change the sensation from pain to tingles. There is some research that shows Capsaicin is helpful in a similar, less stinky way. I couldn't handle the burning sensation though. I don't know if it is gluten-free, but a strong peppermint foot rub on my belly used to be a favorite of mine for work days. Therma care is better though.

Other birth control options:

1) Nuva ring. Hormonal-made me as emotional/migraine as the rest, but maybe not you.

2) IUD -Non hormonal and hormonal options available. Much improved since there were problems in the 70's.

8) Taking charge of your fertility by Toni Weschler. I think a must for every woman. You might find it a used book store (though I would never sell mine) or at the library. It can help you reduce the risk of unintended pregnancy and find the day your irregular period will come. I can't say enough good things about this book.

In regards to food. Since your life puts you in situations that make eating gluten-free difficult, I recommend a purse with a piece of fruit and some nuts. Then in your car, put a grocery bag of fruit, nuts, and mini almond milk boxes. Maybe some protien powder and a box of Rice Chex too. Anything so that you don't get caught tempted to eat something risky. Pecans, walnuts, and almonds seem not to bother me as much as peanuts do. Peanuts react for me just like soy. Can you boil a dozen eggs so you can have one in the morning while you are dressing. I'm allergic, but I remember the days of egg whites dipped in salt. Yumm. I never did like the yolks much though.

If you have a crock pot, throw a bunch of stuff in and leave for work. It will be there when you get home and leftovers will be available for days. The nice thing about a crock pot is that any combination of veggies, broth, salt/pepper, and 1/4 an onion is good by itself. Add any meat, rice or potatoes and you are all set. Who cares if it is soup, stew or cassarole in the end.

Illness: It sucks! We are supposed to get the flu and the pneumonia shots every year. Check the grocery stores and the health departments and Women Infants Children (WIC) for cheaper shots. If you don't have the health care you need, WIC might be an option for you to get care. I used them when I was in college for my OBGYN related care so my parents didn't find out I was on the pill. Make sure you are taking a multivitamin and I agree with the Vitamin D rec. Continue to have fun with your friends, but cut back on social obligations so you have more time for rest and healing.

Next semester, or spring semester, regester for 2 classes. Slow and steady wins the race. There is nothing wrong with an occasional online class as well. My body finally gave out on me and I've had to cut back as well. It has been the best thing for me. If you need to go on antidepressants for the winter, join the club. People don't talk about it much, but there are many, many women on antidepressants and they can work wonders. Sometimes you have to try several to find the one that works for you. Cymbalta has given me a different perspective and more enthusasism (sp) for getting through my days. I suggest med free for a month or two while you get your gluten back under control if you can wait. My heart goes out to you and I wish you a smooth recovery.

Woah! I wrote a book. Blame it on my one day a month of pain killers. All in all, it really is a happy day.

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DarkIvy Explorer

I have actually had my thyroid checked... it was about a year ago. They said it was a bit swollen but the results came back "normal". With the new standards, I wonder if it really wasn't normal. It's definitely worth checking into again, as I've kind of been wondering about this. They said I did have a lot of symptoms that could indicate thyroid problems.

Wow... as far as all the period/birth control options go, I wouldn't even know where to start with all of it! It's a lot of good advice. Right now, my first two days of bleeding are by far the worst, and the rest of the period is mild and non problematic. I too have been told to take ibuprofen (3 pills every few hours or so starting three days before I get my period) but I frankly hated how it made me feel. I'd rather tough out the pain. That much ibuprofen made me feel funny and only somewhat helped the pain. I've been prescribed Vicodin once when my period was completely out of control. Yuck.

Since Seasonale, everything's been pretty manageable. I've noticed that over time, even my first 1-2 days have been getting easier and easier. That's why I'm hesitant to switch to anything else. It's working, I just want something that's gluten-free. I'm on my parent's health plan right now so I can get flu shots under that.

I was diagnosed with some condition relating to my period, but I honestly can't even remember what it was called. Way to be educated, I know. It basically just had to do with the level of pain I was experiencing during my periods. I should really find out what it was.

I've talked to my doctor and counselor and both said they didn't think I really needed anti-depressants. I just need rest and to get healthy, mainly. It has been MUCH more manageable since I've dropped my classes and really have been focusing on R+R. I'm also a bit hesitant to mess around more with medication than I have to right now. I think it would be best if I concentrate on getting better as much as I can through diet and rest first, and use more medication as a last resort. Similarly, I'm afraid to mess around too much with my birth control until I am a bit better otherwise, because I think a sudden change of hormones right now might make me feel worse.

I'm just so freaked out by how complicated this all is. I know something is wrong and I need to figure something out, but just sorting out the gluten from the hormones from the depression from the cold from the possibility of other intolerances or conditions is just overwhelming.

Does it seem reasonable to focus on fixing my diet and resting first, then reevaluate where I'm at with everything else?

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ravenwoodglass Mentor
Does it seem reasonable to focus on fixing my diet and resting first, then reevaluate where I'm at with everything else?

Yes it is not only reasonable it is vital, IMHO. You have been through a lot lately and you will heal the quickest by doing just that, focusing on your diet and getting some much deserved and needed rest. Once you have healed you will be able to get back to things. I hope you are feeling better soon.

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SGWhiskers Collaborator

Liz,

I think you have a great plan. Sorry about the long winded message. My head was a bit loopy yesterday. I hope a few weeks/months of taking care of yourself has you feeling like a new woman. Best wishes with your re-recovery.

SGWhiskers

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DarkIvy Explorer
Liz,

I think you have a great plan. Sorry about the long winded message. My head was a bit loopy yesterday. I hope a few weeks/months of taking care of yourself has you feeling like a new woman. Best wishes with your re-recovery.

SGWhiskers

Don't apologize! It actually addressed a few things I'd never even considered before. It's definitely worth checking into. I'm planning on scheduling an appointment with my regular doctor back home soon so I can figure out a new birth control option and I'm going to ask about some of this stuff.

I really appreciate the fact that you took the time to reply with so much info! Thank you!!

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DarkIvy Explorer

UGH... here's the not so good update:

I went of the BC pills, and while I feel less glutened, I'm on my period again already. I was just on it less than two weeks ago. I'll have to make an appointment with my doctor sooner than I thought to get this sorted out.

Also, I told my boyfriend I was withdrawing from classes, and he freaked out. I've already withdrawn from two other semesters. All three times it has been celiac related... the first time I was unaware of my problem but very sick and couldn't go to school. Last spring I was sick in my sorority house and couldn't do schoolwork, so I withdrew then.

He's all freaking out about the money I've lost... oh my god, believe me, I've THOUGHT ABOUT IT. I HATE IT. This is a last resort, DUH! He keeps saying I can make up the work, but with the biggest retail holiday around the corner, I'll be working full time for the next few weeks. I can't make up everything, plus study for finals, plus work. And because of finances, I HAVE to work. I hate that I have to choose work over school.

THEN he throws in the fact that his parents disapprove, which I knew they would. They've helped me out with rent once this semester when the economy was shot to heck and my hours were cut. I was just informed that this help was "conditional" that I stay in school.

It's just so frustrating. I feel like I have to play by their rules over a few hundred dollars. They expect me to deal with celiac, depression, school and work full time and not make any mistakes over a few hundred dollars. They pay for his every single stupid cent of expenses. He doesn't work at ALL. They are holding me to the same standards they hold him, and he is perfectly healthy and doesn't work. He told me I'd have to pay them back if I drop out... I was intending to pay them back, anyway, and I know I need to stick to my guns but I am just so sick of people not getting it. There's no academic help for people who are sick and need to heal. There's no help at work. My parents can't help. Now I'm being told that taking time off for my health is not valid!

They're supportive to a degree about celiac, but the problem is, they just don't get it. They say school should be my priority and that they'll help, but they help they're offering isn't enough! They think I should keep trucking through. They don't see how sick this is making me! They don't know how hard it is to study when I have gluten in my system and I'm depressed. It's SO difficult. I can work, but learning freaking physics? And cultural anthropology? It's WAY over my head right now. I fall asleep every time I try to read the books. I can't mentally grasp some of the concepts I need to have. I can't even write a decent paper. I hate it that I have to withdraw and waste more money. I really do, I'm in NO financial position to waste money. But I don't see a choice! Even my counselor thinks its the best option, and that I need to focus on my health.

Part of the problem is that they don't think depression is all that legitimate. Their advice is to "stop stressing out".

It'd be one thing if they were offering a bit more, erm, financial support. I hate to say it, but as much as I appreciate the help they have offered, I am NOT their daughter and they cannot hold me to the same freaking standards as their son when he's able to fully concentrate on school. It's unfair for them to withdraw their financial and moral support because I can't continue with school because of things that are not in my control. Like my mom said, often times when people think someone should play by their rules, its more to their benefit than my own. I feel like that's true. I bet they think I'm going to be dead weight on their family if I don't finish school on time- they're putting so much pressure on my bf to finish in time that he's taking 21 credit hours this semester.

People really just don't get how serious this is, do they? My grandma gets sent to the hospital sometimes when she gets glutened... I'm scared to end up like her. I HAVE to take care of my health first. I won't ever get through school if I can't get this under control. I'm just so tired of all this opposition. I'm so tired of people not trusting my well thought through decisions, and so tired of people thinking I'm just trying to take a free pass because of celiac and depression. I'm NOT I'm SO SICK of being sick all the time. I'm fed up. I hate depression, and I hate getting glutened. I hate that even after taking meticulous care of myself the last several days, I'm still sick and barely have the energy to get out of bed, let alone freaking STUDY. I'm SORRY that this isn't working out the way they want, but why can't they stay out of it and keep their mouths shut? I'll pay them back if it makes them happy. Why do they think they know what's best for me?!

Gah... I'm so sorry. I'm just beginning to feel like my decisions are further isolating me, even though they are the right choice. It's like they always say, sometimes the hardest decisions are the right ones... I just need some moral support. I think you all are the only folks I know that understand what it feels like to have this stupid disease treated like it's a simple headcold. Or worse, hypochondria.

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aikiducky Apprentice

(((((((HUGS))))))))

You're not a hypochondriac, you're really ill.

You're doing the right thing putting your health first.

You'll get there, with time!

Seriously, a couple of years from now it's quite possible that you'll be healthy enough to handle both work and school, and a couple of years after graduation it won't matter one whit that you took some time to heal before finishing school. I should know, I finished studying when I was 32. :lol:

People can't make up conditions to help after they've given that help! You'll pay the few hundred dollars back as soon as you can, and if I was you I wouldn't expect more from them. I think now that you can concentrate on just work and healing that you'll manage, you know.

I hope the gluten depression will start to lift soon, that will also make things easier to bear. Hang in there.

Pauliina

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Mother of Jibril Enthusiast
Part of the problem is that they don't think depression is all that legitimate. Their advice is to "stop stressing out".

You're absolutely right that a lot of people just don't get it :(

I went through a severe depression two years ago after losing a baby when I was four months pregnant. I was OK for the first couple of months, but then I started having problems with insomnia (for the first time ever) and things quickly went downhill. I could hardly get off the couch. My husband was a complete &#$%@ about it. I think it freaked him out... and instead of treating me with some compassion, he said things like "snap out of it" and "where is your faith?" I told him, "Don't you think I'd snap out of this if I could??!!" Nobody WANTS to be depressed like that. It's not a choice. If it wasn't for our (living) daughter, I think I would have divorced him. Things are settling down now, but I know I can't trust him if something like that happens again. That sucks. We've been married almost twelve years.

There's no question that you made the right decision about school. I'm so sorry this is putting a strain on your relationship with your boyfriend and his family :angry: Even if you were perfectly healthy, working full-time and going to school is HARD. The fact that you tried to make it work shows just how committed you are to your education... you didn't have to go back!

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      Hi,   Not saying Thiamine (B1) couldn't be an issue as well, but Mg was definitely the cause of my problems. It's the only thing that worked. I supplemented with B vitamins, but that didn't change anything, in fact they made me sick. Mg stopped all my muscle pain (HCTZ) within a few months and fixed all the intestinal problems HCTZ caused as well. Mom has an allergy to some sulfa drugs (IgG Celiac too), but I don't think I've ever taken them. Mg boosted my energy as well. It solved a lot of problems. I take 1000mg MgO a day with no problems. I boost absorption with Vitamin D. Some people can't take MgO,  like mom, she takes Mg Glycinate. It's one of those things that someone has try and find the right form for themselves. Everyone's different. Mg deficiency can cause anxiety and is a treatment for it. A pharmacist gave me a list of drugs years ago that cause Mg deficiency: PPIs, H2 bockers, HCTZ, some beta blockers (metoprolol which I've taken -- horrible side effects), some anti-anxiety meds too were on it. I posted because I saw he was an IgG celiac. He's the first one I've seen in 20 years, other than my family. We're rare. All the celiacs I've met are IgA. Finding healthcare is a nightmare. Just trying to help. B  
    • Scott Adams
      It sounds like you've been through a lot with your son's health journey, and it's understandable that you're seeking answers and solutions. Given the complexity of his symptoms and medical history, it might be beneficial to explore a few avenues: Encourage your son to keep a detailed journal of his symptoms, including when they occur, their severity, any triggers or patterns, and how they impact his daily life. This information can be valuable during medical consultations and may help identify correlations or trends. Consider seeking opinions from specialized medical centers or academic hospitals that have multidisciplinary teams specializing in gastrointestinal disorders, especially those related to Celiac disease and Eosinophilic Esophagitis (EOE). These centers often have experts who deal with complex cases and can offer a comprehensive evaluation. Since you've already explored alternative medicine with a nutrition response doctor and a gut detox diet, you may want to consider consulting a functional medicine practitioner. They take a holistic approach to health, looking at underlying causes and imbalances that may contribute to symptoms. Given his low vitamin D levels and other nutritional markers, a thorough nutritional assessment by a registered dietitian or nutritionist specializing in gastrointestinal health could provide insights into any deficiencies or dietary adjustments that might help alleviate symptoms. In addition to routine tests, consider asking about more specialized tests that may not be part of standard screenings. These could include comprehensive stool analyses, food intolerance testing, allergy panels, or advanced imaging studies to assess gut health.
    • Nacina
      Hello, I am a 45 year old mom, who was diagnosed at 29 with Celiac. My now 14 year old son was diagnosed just before his 4th birthday. Needless to say, we are old pros with the diet. He was experiencing some issues, overall health took a major plummet a year ago, and through a bit of work, was diagnosed with EOE. Tried diet alone, but his follow up endoscopy didn't show the improvements his DR. wanted to see, so I tried the medication. (Steroid). He became extremely backed up, and they had him taking Miralax daily. His health plummeted. He is a straight A honor's 8th grader who plays club soccer very competitively. His health continued to decline and at 13 had a colonoscopy and another upper gi. (He was still compacted even with the prep). I finally pulled him off all meds and mira lax, after reading much negative literature online, and put him on a gut detox diet and took him to a nutrition response dr. Finally things have improved. However...over a year later and he is having relapse stomach pain, debilitating stomach pain. Missing a day of school a week, to three this week. This is where we downward spiral with him. He says it doesn't feel the same as when he has gotten backed up before. He is eating prunes, taking his supplements, drinking water...all of the things. Yet, he is feeling horrible. Pain is abdomen, headache, lethargy, diarrhea . He is on a strict gluten dairy, egg free diet. He has adapted well in regards to diet. But I feel like we are missing something here. He is too active, too outgoing to be feeling sick all of the time. His Bilirubin is constantly high. His white blood count always runs slightly low. His vitamin D was very low last time he ran tests, (last month) when he was sick for a week. His celiac markers show negative, so it isn't that. His last endoscopy showed no Eosinaphils in his esophagus.  I have taken him to multiple Ped. Gastro specialists. They run tests, and we get zero answers. I meticulously go through labs, hoping to make some sense and maybe catch something. Any thoughts or ideas would greatly be appreciated. 
    • trents
      But if you have been off of wheat for a period of weeks/months leading up to the testing it will likely turn out to be negative for celiac disease, even if you actually have celiac disease. Given your symptoms when consuming gluten, we certainly understand your reluctance to undergo  the "gluten challenge" before testing but you need to understand that the testing may be a waste of time if you don't. What are you going to do if it is negative for celiac disease? Are you going to go back to merrily eating wheat/barley/rye products while living in pain and destroying your health? You will be in a conundrum. Do I or do I not? And you will likely have a difficult time being consistent with your diet. Celiac disease causes inflammation to the small bowel villous lining when gluten containing grains are consumed. This inflammation produces certain antibodies that can be detected in the blood after they reach a certain level, which takes weeks or months after the onset of the disease. If gluten is stopped or drastically reduced, the inflammation begins to decrease and so do the antibodies. Before long, their low levels are not detectable by testing and the antibody blood tests done for diagnosing celiac disease will be negative. Over time, this inflammation wears down the billions of microscopic, finger-like projections that make up the lining and form the nutrient absorbing layer of the small bowel where all the nutrition in our food is absorbed. As the villi bet worn down, vitamin and mineral deficiencies typically develop because absorption is compromised. An endoscopy with biopsy of the small bowel lining to microscopically examine this damage is usually the second stage of celiac disease diagnosis. However, when people cut out gluten or cut back on it significantly ahead of time before the biopsy is done, the villous lining has already experienced some healing and the microscopic examination may be negative or inconclusive. I'm not trying to tell you what to do I just want you to understand what the consequences of going gluten free ahead of testing are as far as test results go so that you will either not waste your time in having the tests done or will be prepared for negative test results and the impact that will have on your dietary decisions. And, who are these "consultants" you keep talking about and what are their qualifications? You are in the unenviable position that many who joint this forum have found themselves in. Namely, having begun a gluten free diet before getting a proper diagnosis but unwilling to enter into the gluten challenge for valid testing because of the severity of the symptoms it would cause them.
    • Fluka66
      Thank you very much for your reply. I hadn't heard of celiac disease but began to notice a pattern of pain. I've been on the floor more than once with agonising pain but this was always put down to another abdominal problem consequently I've been on a roundabout of backwards and forwards with another consultant for many years. I originally questioned this diagnosis but was assured it was the reason for my pain. Many years later the consultant gave up and I had a new GP. I started to cut out certain food types ,reading packets then really started to cut out wheat and went lactose free. After a month I reintroduced these in one meal and ended screaming in agony the tearing and bloating pain. With this info and a swollen lymph node in my neck I went back to the GP.  I have a referral now . I have also found out that acidic food is causing the terrible pain . My thoughts are this is irritating any ulcers. I'm hoping that after a decade the outlook isn't all bad. My blood test came back with a high marker but I didn't catch what it was. My GP and I have agreed that I won't go back on wheat just for the test due to the pain , my swollen lymph node and blood test results.  Trying to remain calm for the referral and perhaps needed to be more forceful all those years ago but I'm not assertive and consultants can be overwhelming. Many thanks for your reply . Wishing you all the best.
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