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I Need Advice In A Bad Way Please
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16 posts in this topic

First, thank you all for the wonderful advice, it has given me a lot to think about. I've only been gluten free for about two weeks, and honestly, i don't really need a diagnosis for myself, i just want to feel better. I will go for the blood work today, but that is where the testing will end for me, since in reality, there isn't much else the doctor can do for me other than to tell me to get off the gluten. At the moment, i am sticking to fresh vegies and meats to eat along with some rice. I am hypoglycemic, so can't do without the sugar and carbs, uncortunately, potatoes give me mild upset tumy sometimes, along with anything else i eat too much of. I am trying to stay away from anything processed at the moment, though.

I know i need to have an epipen on hand but have no idea how to obtain one since my doctor didn't suggest it. I'll ask the pharmacy today about that as well.

Thank you again everyone !

I am very new to celiacs disease. I am 48years old, have always been allergic to casin and soy, and since pregnancies in my early 20's, i've been loosing weight. Over the past few months, i have become suddenly allergic to tons of foods, the reactions range from mild nausea all the way up to swelling tongue when i ate almond butter. Someone a while back suggested gluten might be a problem for me, so i have been gluten free for a couple weeks now, and finally my doctor decided that i should get tested for celiacs.

He also gave me prednisone to take for the allergic reactions, but i am unable to take it. (ok, mostly fear). I tend to have wild and severe reactions to medications and i am scared to death to take this stuff. I understand what it is supposed to do for me, as i suspect i may be having a leaky gut issue, but i can't make myself take it. The last time i had any medication, i Hallucinated for almost 2 weeks. I have become so sensative to everything, i am honestly scared i won't make it to the hospital.

Can anyone give me any suggestions to calm down the leaky gut reactions i am experiencing at the moment. Just about anything i try to eat right now makes me ill or worse. I barely weigh 78 pounds at the moment (i am only 4' 10" tall), and i can't really afford to loose any more weight.

Crissy

Edited by Crissy
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I would just like to say that recently I was offered steroids in order to "tone down my immune system." I think Prednisone falls into that chategory? At any rate I looked up Prednisone and it depresses the immune system. Doesn't it make more sense to avoid what you are allergic to, then to mess up your immune system? Well, I thought so. I didn't take it and seem better inspite of it.

I don't know what all I am allergic to yet.

You might try coconut milk to add nutrition. Use olive oil, coconut oil, or butter if tolerated. I use 1 Tbsp per meal and my weight is stable. I will leave to others some more safer foods.

DT

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Sorry to hear that you're having such a difficult time; I'm experiencing similar issues so I know how scary it can be, especially the weird reactions to medications!!

The best advice I can give is to go back to the absolute basics. Feed yourself the way you would feed a sick infant; rice, lamb, chicken, vegetables, fruits, maybe eggs. Always whole foods, organic where possible. Probiotics, digestive enzymes & a good vitamin/mineral supplement a must! To help soothe the digestive tract eat pears, pumpkin, aloe vera juice & slippery elm bark powder. Most importantly, do not eat the same thing every day to avoid developing allergies to those foods - switch it up every 3 days. Avoid corn too. Good luck & hang in there - it does get easier!!

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If you are experiencing swelling of the tongue, you need to have Epipens. While you may be scared of medications, if you don't have an epi pen and have a reaction like you are speaking of, you can die. No other medication (not benadryl or anything else) will stop an anaphylactic reaction which is what you are describing.

Prednisone isn't give to people to stop the immune system from working. Yes, it does depress it but after an allergic reaction the body is on high alert so calming it down is very useful while recovering. If that isn't done there is a greater chance of there being a secondary reaction. 100% yes, avoidance is the key to allergy management but accidents happen.

Crissy, when did you go gluten free and when did you get the blood work done? The thing is you need to be actively consuming gluten for the testing to be accurate. So if it was long enough between going gluten-free and the blood testing, your results may not be accurate.

Look into a good probiotic and maybe the GAPS diet. They are both often recommended for gut issues.

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HI Crissy,

Don't worry about being perfect at the gluten-free diet right away, but spend some time reading the threads and FAQ info here. Check out the threads on breakfast ideas or dinner ideas or even snack ideas (if that kind of thing appeals to you). :) There even threads on safe candy for Halloween and other holidays. And a recipe area for lots of great things to eat.

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

Get tested before starting the gluten-free diet.

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 digestive enzymes.

Avoid dairy.

Avoid sugars and starchy foods.

Avoid alcohol.

FAQ Celiac com

http://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101

What's For Breakfast Today?

What Did You Have For Lunch Today?

What Are You Cooking Tonight?

Dessert thread

Easy yummy bread in minutes

How bad is cheating?

Short temper thread

Non celiac wheat sensitivity article

http://www.nature.com/ajg/journal/vaop/ncurrent/full/ajg2012236a.html

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Crissy, I'm going to repeat what StephanieL said. DO NOT go gluten free until ALL testing is done with & that includes an endoscopy. The doc SHOULD have known that & told you that. ALSO, steroids will screw up the tests. So the prednisone could make the tests negative. Your doctor SHOULD have known that.

So, since your doc has already screwed up twice then why would he get the blood panel right? So here is the current FULL celiac panel. Print it out & take it to him.

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

Total Serum IgA

The DGP test was added recently to the full panel.

Also can be termed this way:

Endomysial Antibody IgA

Tissue Transglutaminase IgA

GLIADIN IgG

GLIADIN IgA

Total Serum IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

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He also gave me prednisone to take for the allergic reactions, but i am unable to take it. (ok, mostly fear). I tend to have wild and severe reactions to medications and i am scared to death to take this stuff...Can anyone give me any suggestions to calm down the leaky gut reactions i am experiencing at the moment. Just about anything i try to eat right now makes me ill or worse. I barely weigh 78 pounds at the moment (i am only 4' 10" tall), and i can't really afford to loose any more weight.

I don't know if this would help, but I, too, always had lots of nasty reactions to medication, and went through a period where I was reacting to everything. So, just in case it might be similar, here's what it was for me.

1. I react to very low levels of gluten, so processed food is often a problem for me. I went to whole foods only. Even still, I was having lots of problems with everything, it seemed.

2. I have a few allergies that don't give me hives, but that I react to, even if they are contaminants. This has been a problem with processed foods, with food waxes on produce, and with fillers and such in medications. I had allergy tests, an elimination diet, and a food journal to find these.

3. I react to something called sulfites. These are in nearly ALL medication, and most sulfite sensitive folks have tons of problems with reacting to medications (I know of a couple who hallucinate with sulfite contact, too, actually). Sulfites can be added to food, but there are also naturally occurring sulfites, like those found in some fermented foods.

Some sulfite sensitive folks will also react to foods naturally higher in sulfur oxides, like eggs or onion (and lots more, if you are sensitive enough). And the more sensitive people I know of also react to many pesticides, so lots of produce makes them sick as well (I have this issue, too). Inhaled sulfites can be a problem, and there are some bottled or city water sources that can contain sulfites and be a problem, too.

A good sulfite resource is this site:

http://holdthesulfites.com/

Another good place is the yahoo group sulfitesnomore.

Even if sulfites don't look like a possibility, I'd really suggest taking a look at all the meds that you've reacted to. If you can call up the companies and get a list of excipients (the inactive ingredients), maybe you can find a connection between an ingredient and your reactions, you know?

The medicine reaction was one of the clues that clinched it for me, in the end.

Good luck!

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Crissy,

Sorry you are so sick, I know it has to be frightening. I too, was reacting to many foods before I learned of Celiac. I felt like there was nothing I could eat. If you do not care about the official diagnosis, you can remain gluten free. However, you do need to have something on hand for the emergency situation- an Epipen.

Prednisone helped me for a while. I was prescribed Prednisone before we knew what we were dealing with was really Celiac disease. I took it for 2 months. The bad thing is it has side effects if you take it long term. But if you are having reactions, it can help. I had to stop after 2 months of 5 mg a day due to the side effects on my stomach. It hurt so bad I couldn't eat, but then, I was also eating wheat. Having said that, I think you should at least fill your prescription and talk to your Dr. about how you are feeling. There may be other medications that can help you. I talked to my Dr. when Prednisone stopped helping me and he prescribed Promethazine which is an anti-nausea medication but also an old-time anti-histamine. It helped me greatly when I needed to figure out what I was reacting to in addition to gluten. I noticed it also helped my food reactions and that was when my Dr. told me that it was also an anti-histamine and he then prescribed it as needed. It has a sedating effect for some people but it's not really noticeable to me.

Regarding food, the safest food for me was meat and chicken and simple soups made with vegetables, broth, and meat/chicken. Cooked vegetables are tolerated better than raw vegetables when you are really sick and I was only able to eat cooked vegetables for the first few months of being gluten free.

You can think about whether you want the testing or not. Knowing you will have to eat gluten again to test accurately causes many people to diagnose themselves and get on with their gluten free life. You can do that if you wish. It does take time for the healing to happen. I hope you can find some relief soon. I know how scary it can be. An elimination diet will help you once you are able to find a few foods that you can tolerate, you stay on them until you feel well enough to "challenge" new foods. Keeping a food diary can help too.

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Don't eat in restaurants

Eat only whole foods not processed foods.

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

Hi Crissy,

There's already a lot of good advice in these posts. I have leaky gut and can hardly eat anything either. I would definitely try keeping your diet as simple as possible. Whole foods are basically foods with only one ingredient, that you can combine with other whole foods at home. The 30 day raw food diet helped me. Raw foods (uncooked) are easier to digest because they retain more digestive enzymes. A rotation diet can help identify which foods are giving you the trouble, and keep track of what you are eating with a food journal so you can see the patterns. I would be extra careful eating more almonds since that can become a life threatening allergy. Prednisone is a heavy duty drug, that I personally would only consider taking after you've tried absolutely everything else first. Good Luck, you will figure this out!

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Sorry to hear that. I would not personally take Prednisone except perhaps as a last resort. That med can raise blood sugar and cause diabetes.

Gluten isn't an issue for me personally but I have a ton of intolerances. It was only after I learned that I can't have things like mint, thyme and tarragon that I finally began to get better.

I do take a ton of herbs and supplements. I mainly ferreted these things out by myself. Some of my Drs. suggested things, including a naturopath. I think it is important for me to not only take probiotics but digestive enzymes. But I have to avoid bromelain. That makes me very ill.

It did take me many years to figure out the supplement cocktail that works for me.

Two foods that are kind to me are white rice and potatoes. I do have to be careful with them because I do have diabetes. Quinoa works well too but my daughter is intolerant to that. I used to get sick a lot and would make chicken broth with rice, only to discover that I am intolerant to chicken. So now when my stomach is acting up, I just eat the rice and the potatoes. But if you are one of those people who can develop an intolerance to foods by eating them too often you would have to find other mild things that you could work into the mix.

When my stomach is not acting up, I try to eat as many vegetables as I can because I need the vitamins. I don't personally like meat too well. But if you can tolerate them, things like chicken, turkey and white fish are usually good choices.

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I would just like to say that recently I was offered steroids in order to "tone down my immune system." I think Prednisone falls into that chategory? At any rate I looked up Prednisone and it depresses the immune system. Doesn't it make more sense to avoid what you are allergic to, then to mess up your immune system? Well, I thought so. I didn't take it and seem better inspite of it.

I don't know what all I am allergic to yet.

You might try coconut milk to add nutrition. Use olive oil, coconut oil, or butter if tolerated. I use 1 Tbsp per meal and my weight is stable. I will leave to others some more safer foods.

DT

Unfortunately, coconut falls into the category of allergic reactions . Can't have it at the moment either.

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Unfortunately, coconut falls into the category of allergic reactions . Can't have it at the moment either.

There are several herbs which have been shown to reduce the inflammation response. Allergies are essentially the immune system over-responding to stimuli. I was on an inhaled steroid and nasal steroid for bad allergies and asthma. I was starting to show signs of adrenal fatigue due to the long term use of the steroids, even though I wasn't on a systemic steroid. My body is very sensitive to any type of chemical messenger. I did some research and started taking tumeric which is a potent anti-inflammatory. Basil is also good. Another molecule, quercetin, which is naturally found in green beans, broccoli, apples and Brussels sprouts is a broad spectrum kinase inhibitor and also blocks nucleoside transporters (the area of research focus in my lab). The nucleoside transporters are a part of the whole "volume control" regulating adenosine, which is what gets cranked into high gear with chronic inflammation. The quercetin REALLY REALLY helps with accidental glutenation. If you take both the quercetin and the tumeric (which also supports your immune system) over time you experience a decrease in the severity of your response. I would DEFINITELY get your doctor to prescribe you an epi pen.

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I would DEFINITELY get your doctor to prescribe you an epi pen.

I agree, if you get allergic reactions that affect your breathing at all, an epi pen (epinephrine) could save your life. They're easy to get from a doctor. I have one around for my bee allergy. Haven't ever needed it so far. At the very least carry Benedryl with you.

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Hello

Feeling so unwell is awful. I've been to a naturopathic/ medical doctor and she says that nearly all food intolerance usually leads to a simple liver cleansing. In any case this is unlikely to hurt anyone. The best advisors say to do it at the start of every season for a few days.

I'm not suggesting it will fix celiac disease, as this is how the intestines are affected. Gluten will always affect them. It could possibly help with other allergies, worth thinking about.

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Hello,

My son has leaky gut.

And he had to take steroids (because of his kidney autoimmune issues).

Steroids in fact only worsen leaky gut (is it because the medication itself, or because of parasite overgrowth while on immune suppression - this I don't know. rather parasites, I think).

What works for his leaky gut

L-glutamine (a must!!!)

good antioxidant/antiinflammatory (I don't know anything better than resveratrol)

good probiotics (but not on a constant basis - as they contribute to oxidative stress too...)

curcumin if you tolerate it

Oregano oil to control the parasites

as for digestive enzymes - that worked for him but only for a while, so I stopped them

And of course diet that eliminates your allergens (in our case it is gluten and soy free and vegan)

Wishing you health

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Ditto on the benadryl. I always have some on hand becuase of my lovely family history. Another thing to try is if you haven't had a food in the while, put a little of it on your wrist then wait for half an hour or so. The same sort of concept that i've heard parents do to test their infants if they have peanut allergies. If nothing happens, go ahead and try a little bit. Genearlly speaking, the worst part of it will occur within the first half hour or so.

You just reminded me, i ougt to have an epi pen (bees are lovely, as are tomatoes and several antibiotics). But since i haven't had any reactions that have comprimised my airway the chances of getting one are slim and zip (both mother and grandmother have them).

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    • Hi everybody,  I have had symptoms of Celiac since mid pregnancy and they have gotten worse over the last 5 months post partum. I have constipation, periods stopped, extreme fatigue,  joint pain, weak muscles, dizzyness, migraines, light sensitivity,  pins and needles in hands and feet, elevated TSH, depreason and anxiety. Was put on thyroid meds but it didn't help any of my symptoms. My doctor told me to try gluten free and reintroduce it. I tried it for 2 weeks and started feeling quite a bit better, then reintroduced it and felt worse than ever! It's definitely a gluten problem. She suggested I get the Celiac panel run so I got tested for Ttg iga, DGP igg and EMA all came back NEGATIVE! by this point I had only reintroduced gluten for a few days. She said my antibodies shouldn't go down by much in this time frame. Should I push for a referral to a GI doctor? I don't know why I feel the need for diagnosis? Probably my mother in law laughing when I said I can't eat gluten anymore and she tried to offer me things like donuts, saying it's just a little.  She just doesn't get it. So now, do I suffer for 6 weeks to get the biopsy or just stop eating gluten and be done with it.  I have also noticed while introducing new foods to my baby that he throws up whenever I give him anything wheat based. I doubt they can diagnose a baby and I refuse to damage his intestines for a diagnosis.  Maybe I should get my daughter tested as well? She is 3 and has been complaining of upset tummy and is frequently constipated. She is growing well though but is also quite thin. She is not a big eater. She may be constipated because she holds it. She is afraid to poop on the potty. Since I have had symptoms for only about 10 months, could there not be much damage yet? Sorry for the long post! 
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