I Need Help From Fellow Celiacs

[ilovechocolate]

Okay I dont want to sound like I'm complaining but i guess thats what it is. I need some advice from those of you with multiple food allergies/intolerances.

I am a totally confirmed celiac and have been on my gluten-free diet since August 2004. I have ulcerative colitis. I am lactose/casein intolerant (and have been for 24 yrs.) I know that it can take a long time to heal and start feeling better....but I'm not. I dont eat many processed foods and I live in a 95% gluten-free house. My husband has beer (thats in another fridge) and my dogs food (which i dont touch).

I feel like total crap. Every day all day. I have found that when I eat a well balanced diet of protein and carbs. I do better than with a low carb or protein diet. I dont eat much soy or peanuts b/c i think i may have a problem with them. I have this constant headache that will not go away. its been here for almost 6 months now. I have no energy, I'm tired all the time, i dont sleep unless i take something to knock me out and then of course its soo hard to wake up. I can hardly work let alone take care of my house, I'm dizzy, i have brain fog, i get D every couple of days. I feel like my heart is beating out of my chest. I'm so depressed (and I'm on meds that i take daily).

I feel horrible complaining but i am the only one here with celiac. When my husband is at home he is gluten-free. and I'm the only one in the family with celiac. I dont have friends here in Dallas with celiac let alone know anyone with it. I try to talk about whats going on with my family and friends but they just dont understand. and no one understands that if I'm on my gluten-free diet why am I not better???

I would love to know the answer to that. I'm lost and dont know what to do, I'm 24 and my great grandmother does more than me!

i need help please.

Emily

[tiffjake]

Hi Emily, I am so sorry that you are still feeling so bad. Do you think that maybe, just maybe, you are getting glutened somehow, somewhere in there? Hidden, sneaky, bad bad gluten in there? That is what it sounds like to me.

I hope someone else has better information for you, and I hope you are feeling better soon.....

[Rachel--24]

If you are sure you are 100% gluten-free....and it sounds like you are....then I would look into other issues. You can be continuing to feel bad for a reason completely seperate from Celiac.

Many people have issues aside from Celiac and my bet is that you're dealing with a seperate issue if you've been on the diet 3 years without improvement.

[Ursa Major]

Hi Emily, I feel badly for you, you're in the same age range as my children. This is what comes to mind: Have you made sure that you don't use any personal care products that contain gluten, like shampoo, conditioner, lipstick, chap stick, toothpaste, soap, lotion etc.? Are your vitamins confirmed gluten-free? Vitamin E is often derived from wheat germ oil. Do you take any medications, and if yes, have you confirmed that the filler isn't wheat starch?

You may have a low functioning thyroid, which could cause all those symptoms. What is your average body temperature (taken several times during the day)? If it is lower than what is considered normal, you likely have a problem with your thyroid (even if your blood work appears to be normal).

You may have Lyme disease as well as celiac disease. It is not as uncommon as many people would have you believe. It also can cause all those symptoms, it is very debilitating.

You may have other intolerances, like me. Check the links in my signature on lectins and salicylates to see if any of that rings a bell. Rice and eggs especially will cause almost identical symptoms to being glutened for me. All grains make me ill, that includes corn as well.

I hope that with all of us brainstorming on your behalf, we will be able to help you figure it out.

[Rachel--24]

I just noticed you are 24??

You shouldnt have to be experiencing this kind of pain at such a young age.

I'm sorry you're going through this and I hope you can get some answers soon.

I did not want to mention Lyme Disease (as some people seem to get upset about it).....but your symptoms can be caused by Lyme so thats one thing you can look into. As Ursula said....its not uncommon to have both Celiac and Lyme...lots of people have both.

[Judyin Philly]

Emily, so sorry and i can empathize with you as I'm still not 100% better after going gluten-free..

after the 3-5 months the dairy/casein came up but worse reactions to soy..even worse for me now than gluten.

also, it's been said here...don't kiss hubby while he's drinking beer..know it sounds funny, but the experts on here all seem to agree...make sure he brushes his teeth etc. if you get my drift.

like Rachel said, could be other issues, low thyroid etc but i'd sure get rid of the SOY for me it's a killer.

judy

[Cottage-Soul]

I feel like total crap. Every day all day. I have found that when I eat a well balanced diet of protein and carbs. I do better than with a low carb or protein diet. I dont eat much soy or peanuts b/c i think i may have a problem with them. I have this constant headache that will not go away. its been here for almost 6 months now. I have no energy, I'm tired all the time, i dont sleep unless i take something to knock me out and then of course its soo hard to wake up. I can hardly work let alone take care of my house, I'm dizzy, i have brain fog, i get D every couple of days. I feel like my heart is beating out of my chest. I'm so depressed (and I'm on meds that i take daily).

i need help please.

Emily

Emily,

I have a lot of the same symptoms as you so I can relate. I've been having the constant headaches for over 5 months now (mine go away during the spring and summer usually), tried some meds but quit them due to side effects and have just started the gluten-free (plus wheat and dairy free) diet a week ago so I'm not seeing results as of yet. Hopefully soon.

Have you been checked for Hypothyroidism? Ask for the full thyroid panel (T3 and T4), not just the TSH. Autoimmune Thyroiditis (Hashimotos) won't always show up on the standard TSH test.

Also, antidepressants have a lot of side effects. I'm not sure which medication you are taking, but here are side effects from Paxil: PAROXETINE (Paxil) Common: Nausea, vomiting, sedation, fatigue,

drymouth, headache. Occasional: Insomnia, agitation, tremor, diarrhea,

constipation, dizziness, sweating (a lot of the symptoms you are experiencing!!). You might want to Google "side effects" and the med you are taking and see if that could be your problem.

Hope you solve this soon! It sucks to feel like crap all the time.

[larry mac]

....I feel like total crap. Every day all day......I have this constant headache that will not go away. its been here for almost 6 months now. I have no energy, I'm tired all the time, i dont sleep unless i take something to knock me out and then of course its soo hard to wake up. I can hardly work let alone take care of my house, I'm dizzy, i have brain fog, i get D every couple of days. I feel like my heart is beating out of my chest. I'm so depressed (and I'm on meds that i take daily).....

i need help please.

Emily

Emily,

Not that I know that much about it, but sounds like you may need your medication re-examined.

Do you have a personal physician? By that I mean an MD you see regularly? You may have specialists you also see, but your regular doctor knows your history and (if he/she is good) can act as a second opinion. The downside is they will usually try to refer you to a specialist in their group. I would much rather find a doctor through a trusted friend or relative.

Go see your doctor asap. If they can't help you, you need a new one.

best regards, lm

[Adelle]

I'm giving u a mental hug. I'm 22 and still sick, stable, but not up to where I'd like to be. *hugs*

Ursa mentioned getting ur thyroid checked... I have like every classic hypothyroid symptom, but every test comes back "the low end of normal". What can I do then?

What do u do if the tests don't show enough? Or anything?

[Ursa Major]

I'm giving u a mental hug. I'm 22 and still sick, stable, but not up to where I'd like to be. *hugs*

Ursa mentioned getting ur thyroid checked... I have like every classic hypothyroid symptom, but every test comes back "the low end of normal". What can I do then?

What do u do if the tests don't show enough? Or anything?

Check out these two websites for some answers:

Open Original Shared Link

Open Original Shared Link

[ravenwoodglass]

I agree with the others that you need to be evaluated to make sure nothing else is going on. First though you need to make absolutely certain that all the meds you are on, even OTC are gluten-free and that you are not getting non food glutened. I would change your dogs food today, You may not be touching his food but do you ever touch the dog or does he lick you? Do you make sure that hubby brushes his teeth before your goodnight kiss after he has had a beer or two?

You should throughly check out both the possiblity of CC and if that is not an issue you need to be checked for the other things that folks have mentioned.

[chatycady]

I would suspect another "autoimmune" problem. Celiac can trigger more of them. Anemia (iron and B-12) can cause a constant headache and fatigue. Thyroid problems. Liver problems also can cause a headache and fatigue, your med's may be stressing your liver.

TIme to see a Dr.

You are much too young to be so tired and in pain. May God heal you quickly and completly!

Chaty

[ilovechocolate]

thank you thank you thank you

I sure needed some encourgement. I do need to do some follow up stuff with my doctors, I have been wondering about my thyroid. thank you so much for the advice, i really needed it. I will check back with updates. hopefully i can get in with the docs. this week. its so nice to know that i'm not the only one out there that is having these problems. it makes me feel like i'm not just making it up in my head. thanks again.

God bless

[babygirl1234]

im going though the same thing and my GI doctor told me that my celiac disease has started to act up on me thats what showed in my biopsy was my celiac disease and the damage thats been done and ive been gluten-free for 10 years or so, and i guess it takes awhile for your insides to heal

[ilovechocolate]

okay, I just went through all of my toiletries and cleaning things. I found nothing in any toiletries that could have gluten and I rechecked to make sure its all on the gluten-free list.

I threw out all of my cleaning sponges and every plastic container we own. I am going to get some disposal instead. some of the containers we have I had back in college when I ate gluten, maybe thats something. my sweet husband said that he will get rid of all the beer and if he needs some he will get the gluten-free kind even though he really doesn't like it. its sweet that he will give up beer for a bit

what kind of dog food is gluten-free? is it expensive? I cant really afford to get high pricey dog food.

how much lower temperature is considered low? like if its just a few points off not a whole degree does that matter? thanks

[kbtoyssni]

You might also consider things like chemical sensitivity or electrical sensitivity. Or maybe mold in your house.

[Susanna]

Emily--good for you for doing a thorough gluten check at your house--while you're at it, don't forget to think about envelopes (don't lick them--envelope paste has gluten), and if you go to church: communion wafers.

Have your husband try gluten free Dragon's Gold beer by Bard's Tale--I found it at Whole Foods Market--it's pricey, but my husband (a non-celiac) likes it better than Fat Tire and some of the other micro brews he usually drinks.

I do think Ursula has a good idea in you getting checked for Lymes Disease--the 11 year old son of a friend of mine had complaints of no energy, joint pain, and brian fog for months and finally it was discovered that he had Lymes, and had 100% resolution of symptoms after he got treated.

Also, I think that for many of us celiacs, grains just don't sit well with us--I read up on the Paleolithic Diet (type it into your browser and you'll get lots of hits). It's a diet that avoids cultivated grains entirely--you eat meat, seafood, fruit, veggies, nuts. No grains at all. The theory is that our human genome evolved on this type of diet, and that we are actually eating grains is out of sync with our genetic makeup. Well, I've been experimenting and eating virtually no grains or super starchy foods (no rice, corn, potatoes, legumes, etc.). And I've noticed I feel SO much better on those days, than on the days I eat gluten-free bread with rice flour, or gluten-free cookies with cornstarch and rice, or a baked potato, or beans and rice. Something to think about.

Hope you feel better soon,

Susanna