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Need Help With Symptoms!
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Hi all! My name is Rebecca and I found out I had celiac disease about 2 months ago. I was having a good amount of the symptoms: constipation, migraines, dizziness, confusion, hypoglycemia, nausea, fainting spells, seizure like symptoms, etc. The doctors had told me that by six weeks everything will be back to normal. Well six weeks have come and gone and I am feeling worse than ever. I'm not sure if the symptoms I am having are common or not and I'm not sure what to do about them. I get extremely exhausted to the point where I can't get out of bed and after doing minimal tasks throughout the day become even more exhausted. I keep having these chills that hurt almost, I am freezing but my skin is warm or hot. It's a freezing cold that feels like it's coming from my bones and nothing can warm me up. I keep getting these awful pressure headaches that make my vision blurred. I become extremely week throughout the day. I also seem to get lost easily, meaning I can't remember things that I have been talking about at the time or half way through a sentence my thought just seems to stop. I've read that that can be a symptom but I'm not sure about it. The constipation keeps getting worse as well. I also feel like I have gained about 20 lbs. in 5 days. I feel extremely bloated all the time. I have also been having sharp stomach pains and extreme nausea. Sometimes after eating something gluten-free I have a reaction to it as it if was packed with gluten, I get nauseous and feel like I need to throw-up (but I never do because I really do not like throwing up to the point where I will do ANYTHING to not). I also can have these random stabbing pains in my chest. Sort of like the pinched nerve feeling but it's a little different, it's in the right side or left side of my chest and then that whole side including my arm will go numb for a few minutes. I think I have been pretty good at keeping a gluten free diet but I am sure there are more slip-ups than I know of because I still don't know everything 100%. Any help or suggestions would be greatly appreciated! Thank you so much!

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Most people can't handle gluten free substitute foods at first. Your gut is damaged by celiac and it takes a lot of energy to heal. The best thing to do is have a simple diet. Meats, veggies and fruits, rice, etc. Eat foods that have few ingredients. Give your body a chance to heal.

Also dehydration and electrolyte imbalance is a HUGE issue for us. The gut issues, especially D, really take it out of you. I was having severe dizzy spells, chills, all of that until someone on here told me about it and my doc confirmed. I find Gatorade is my best solution. I tried expensive electrolyte solutions from the health food store and all of them made my symptoms worse. Good old Gatorade changed my life. Literally. I drank a full glass of half Gatorade and half water in the morning. Then I sipped water with about 1/4 Gatorade during the day plus plain water. You need to super hydrate right now and sip water all day long.

Get rid of all the gluten in your beauty products. I resisted this and kept getting glutened from shampoo and conditioner running down my face, or hand lotion getting on my food.

Many people have issues with soy, dairy, corn, and nightshades at first. Many if not most grow out of it as they heal. I have brought potatoes and tomatoes back into my diet now after about a month without them. I had awful reactions to xanthan gum and now I'm fine with it.

For celiacs, gluten acts as an opioid (spelling?) which means there is a TRUE withdrawal process just like with drugs or alcohol. The only way to support your body with that is the clean diet, hydration and REST. I spent an entire weekend in bed a couple of weeks ago and it made a huge difference for me.

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If you eat out, tell us where you normally eat and what. There is hidden gluten in wheat starch glaze on fast food chicken. Some beef will be marinated in stuff that has wheat. Meat can be marinated in beer. Soy sauce is a culprit.

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Hi Rebecca:

As sandsurfgirl says, it is best if it at first you avoid the gluten free substitute foods and stick with only natural whole foods selected from the outside of the supermarket. The only exceptions I would make would be an occasional slice of gluten free bread (everyone likes Udi's), some rice pasta (Tinkyada perhaps), and of course you have to go in the middle to get the rice. Your damaged gut is not adjusted to digesting the alternative gluten flours in all the other gluten substitutes and that can come later. In the meantime, to help your small intestine heal you could try some probiotics (gluten free of course) and maybe some digestive enzymes since the pancreas has often been impaired in its enzyme output by the overload of gluten.

It is also highly likely that if you have damaged villi in your small intestine your are lactose intolerant and should switch to an almond, hemp or rice milk (not Rice Dream as it does have some gluten); and I would not recommend soy at this point as a lot of celiacs also have problems with soy.

Make sure you have eliminated all sources of gluten in your personal care products and that you are not getting cross-contamination (as in a shared kitchen facility) and that your cookware is not contaminated with gluten (you need at the very least a new toaster, colander, wooden and plastics spoons and cutting boards), and just be scrupulous about handwashing and keeping surfaces clean and free of gluten.

Keep talking to us on how you are progressing and ask any questions that pop into your mind. Also, read a lot on these forums, because most of the questions have already been asked and answered.

Hope you are feeling better soon. Many of us have been where you are now.

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Thank you both so much for responding! It is such a relief to know that people have had the same problems! I am definitely going to start with the simple diet! I've just been trying to figure out how to eat the things I used to eat. In all honesty I don't eat out because I'm too afraid to. I live in LA and I went out once or twice after I was diagnosed and having to explain to the waiters and waitresses what I can't eat seemed to be extremely difficult! Do you have any suggestions of places I could eat at?

As for personal care products, I haven't done that yet but have been researching which products are out there that are gluten-free. I read that California Baby is good for hair care. Do you have any suggestions?

Thank you again! So much!

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I can't even do Udi's bread right now. I haven't figured out what bothers me. I don't really eat bread, but I do make a simple one that has the consistency of corn bread. I use the Arrowhead Mills Gluten Free baking mix. It's the simplest baking mix I've found ingredient wise. I also make pancakes out of it and they are good.

Most Bath and Body Works lotions have no gluten ingredients in them. I use Matrix and Enjoy for my hair, but you have to read because not all of their products are gluten free. Suave and soft soap have some hand soaps that are safe, but again read labels.

I love it when doctors say "By 6 weeks, or 3 weeks, or one week, or whatever, you should feel better." They are so stupid and have no clue what the heck they are talking about. EVERY person on here has had a different healing path and amount of time to heal. Some people take 2 weeks and some take a year.

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I didn't even think of eating out in a restaurant until I had been gluten free for about six months. The whole process is so fraught with risk when you first go gluten free, it is hard enough to eliminate the gluten when you can read the labels, let alone whatever the restaurant might put in :o This, I am sorry to say, is learning to relive your life, and is best handled a step at a time. Get to be confident in your ability to buy and cook gluten free, to know what products have gluten in them and to avoid, to learn that so many restaurant sauces have soy and flour in them. that most meats are marinated in who knows what, that many salad dressings are unsafe, and to be confident when you talk to the managers, chefs, and waitpersons about what you need and what they need to do for you. Yes, it is a pain to have to put your life on hold for a while, but it is more of a pain to keep glutening yourself and delaying your healing. Plan on doing your own cooking for a while--it will be healthier for you anyway. :D

It is extremely worthwhile to take a few months to work everything out, to give yourself time to heal and to adjust to the new way of eating, before you expose yourself to the uncertainties of others cooking for you (except under your strict supervision). This is also the time to eliminate all the other possible sources of gluten in your life, whether from pet food, lip gloss, toothpaste, hand lotion. It is good to consolidate all this information in your mind before you expose yourself to what others are offering you. I use Tea Tree Shampoo and conditioner for my hair, Neutrogena and Dove lotions and soaps, just the basics, nothing fancy. Even then, you have to read all the labels. I am not familiar with California Baby. After you get comfortable that you are gluten free, then you can start exploring for other more exotic products that may also be gluten free, and venture into restaurants with more confidence. At least that is my opinion. Your lifestyle ia probably a lot different from mine and you will probably chafe at these restrictions, but the important thing right now is the healing process.

As one of us has said previously, a lot of the gluten free grains are hard for a damaged gut to digest so they should be kept to a minimum. There are lots of wonderful healthy whole foods, like sweet potatoes and avocados, to entice your taste buds and keep you happy for a few months while you learn to live gluten free. You can do this!

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'Becca, it sounds as though you're not getting a properly balanced diet, and/or you're still being glutened somewhere, either by cross contamination, or something you're eating regularly has gluten in it.

I will agree with the others and say that in the early weeks/months of going gluten free, you should stick to a natural, whole foods diet. No packaged foods, no "gluten free" alternatives, just what Mother Nature herself made naturally gluten free. Meats, veggies and fruits, nuts, seeds etc...

Dizziness, lethargy and exhaustion can all be caused by malnutrition, and electrolyte imbalance, and likely dehydration. Personally I wouldn't recommend Gatorade at all, as it is full of high fructose corn syrup in the US, (and other sugars elsewhere that are not nutritionally needed) which is processed by the liver and converted to stored body fat. You can easily balance your sodium and minerals with natural foods. Use kosher salt or sea salt with a wedge of lemon for a home made "sport drink", eat avocado or cateloupe for potassium (more than bananas!), and take a magnesium supplement (which will also help with the constipation!).

For relief of the constipation (which could be causing your pain), by all means, take a laxative now to get rid of it, and then on-going it can be managed diet alone. Make sure you're getting plenty of fibre every day, I use flax meal, and LOTS OF WATER! to stay regular. I too had constipation with my Celiac symptoms, NEVER had diarrhea, some days I would wish for a good bout of food poisoning so that I *could* get diarrhea!

Are you taking any prescription medications? Any off the shelf pain killers? They can cause constipation. Some may even contain gluten. I found out that I cannot take anything with codiene, because it stops me up BAD! Even though the product I was taking is gluten free, my intestine really doesn't like it at all! Nope nope nope!

Here's a recipe that may be helpful to keep things moving. Drink AT LEAST half a litre/16 oz of water with this. More won't hurt.

Muffin in a minute Serving Size: 1

1/4 cup flax meal

1/2 teaspoon baking powder

1 packet splenda or other sweetener (I use stevia)

1 teaspoon cinnamon

1 large egg

1 teaspoon butter or coconut oil

Put the dry ingredients in a coffee mug.

Stir.

Then add the egg and the butter. Mix.

Microwave 1 minute (or more). Take out. slice, butter, eat.

Cream cheese would go nicely on top, too.

The shape of this can be changed by making it in a bowl.

It can be "toasted" once it's cooked.

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Thank you all so much! You have been really helpful! Whole foods diet, here I come!

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I did have another quick question for whoever is reading, does my boyfriend need to go gluten free as well? Could that be another cross contamination? Does he need to use gluten-free cosmetics as well? Thank you again for your help!

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I understand why people don't recommend Gatorade, but I did try everything, including the homemade sport drink and the ONLY thing that worked for me was Gatorade. I was so dizzy I couldn't drive, nauseous every time I ate, couldn't tolerate anything and Gatorade solved it.

It has NO CORN SYRUP in it. At least not any of the different flavors I have purchased.

I didn't drink it for a couple of weeks and was fine. Then I had some wine yesterday and woke up dehydrated. I've been dizzy and sick all day. DH got me Gatorade and I'm fine again.

Ideals are good, but in the end you have to do what works.

If you have electrolyte imbalance, which I truly think you do from your symptoms, salt is not going to solve it and too much salt can make you sicker. Electrolyte imbalance is not just about salt.

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I'm also wondering if you have had your thyroid checked? Hashimoto's disease is not uncommon with Celiac. I also have Hashimoto's disease. The worst symptom for me is the cold to your bones feeling, almost like the flu. Where you cannot get warm and it makes you physically sick you feel so cold. That was my WORST symptom. Chills, exhaustion were also symptoms of mine. Just a thought... Also mental fogginess, slowness, and constipation are also symptoms. It's just a simple blood test. Hope you feel better soon.

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I did have another quick question for whoever is reading, does my boyfriend need to go gluten free as well? Could that be another cross contamination? Does he need to use gluten-free cosmetics as well? Thank you again for your help!

If all of us asked our significant others to be gluten free, I think we'd all be single. ;) I wouldn't with this lifestyle on anyone who didn't have to do it.

He needs to wash his hands after eating gluten and brush his teeth before he kisses you if he has eaten it. If you live in the same house, then designate areas and have separate toasters. Be crumb conscious and you'll be fine.

We are the oddballs and we have work around the gluten world.

There is no reason for him to change his shampoo and soaps, etc. The reason you need to do it is because it gets in your mouth in the shower.

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Hi all! My name is Rebecca and I found out I had celiac disease about 2 months ago. I was having a good amount of the symptoms: constipation, migraines, dizziness, confusion, hypoglycemia, nausea, fainting spells, seizure like symptoms, etc. The doctors had told me that by six weeks everything will be back to normal. Well six weeks have come and gone and I am feeling worse than ever. I'm not sure if the symptoms I am having are common or not and I'm not sure what to do about them. I get extremely exhausted to the point where I can't get out of bed and after doing minimal tasks throughout the day become even more exhausted. I keep having these chills that hurt almost, I am freezing but my skin is warm or hot. It's a freezing cold that feels like it's coming from my bones and nothing can warm me up. I keep getting these awful pressure headaches that make my vision blurred. I become extremely week throughout the day. I also seem to get lost easily, meaning I can't remember things that I have been talking about at the time or half way through a sentence my thought just seems to stop. I've read that that can be a symptom but I'm not sure about it. The constipation keeps getting worse as well. I also feel like I have gained about 20 lbs. in 5 days. I feel extremely bloated all the time. I have also been having sharp stomach pains and extreme nausea. Sometimes after eating something gluten-free I have a reaction to it as it if was packed with gluten, I get nauseous and feel like I need to throw-up (but I never do because I really do not like throwing up to the point where I will do ANYTHING to not). I also can have these random stabbing pains in my chest. Sort of like the pinched nerve feeling but it's a little different, it's in the right side or left side of my chest and then that whole side including my arm will go numb for a few minutes. I think I have been pretty good at keeping a gluten free diet but I am sure there are more slip-ups than I know of because I still don't know everything 100%. Any help or suggestions would be greatly appreciated! Thank you so much!

Hi! I just found this board! Your symptoms sound just like mine, although I am just now being tested. I'm down to being able to stay awake 2 hours a day, then a 2 hour nap, etc. I've been complaining of all your symptoms for as long as I can remember. I get hot and cold at the same time; my body can be burning up, but I'm cool to the touch. OR, I can be SO cold, but my apt. is 72d F. I forget where I'm going, what I'm doiing. I forget what TV show I've been watching when the commercial comes on. I've begun to feel like I'm living in a different universe, because I'm not even sure of what is real and what isn't anymore.

I'm not crazy, I'm just frustrated .... but maybe this IS my problem. I hope so.

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My hubby is gluten-free and he thanks me every day for being Celiac (he lost 20 lbs and feels better). You can modify your recipes (like soups) to be gluten-free and they actually TASTE BETTER and FRESHER without the gluten. I use Imagine vegetable broth. There are many gluten-free products that aren't gluten-free enough and/or I am sensitive to additional products. There is a great app called NxtNutrio and if you put Celiac as a condition in your profile, it will verify via barcode if something is safe for Celiacs. It even nixed Bob's Red Mill gluten-free Oats which I found disturbed me before I checked them with the app.

Obviously, the items without a barcode, like salad, avocados, etc. are infinitely better ;-)

We bought a freezer, microwaveable freezer cups and a huge soup pot so that on my good days, I can make and store loads of pre-prepared healthy food that we will have on hand even when I'm sick (and especially so!). There are many recipes online for preparing gluten-free freezer meals to dump in the crockpot in the morning. If you can convert your recipes, you may get away with just being a fantastic cook and no one will be the wiser that it's gluten-free.

Good luck!

Cali

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    • I think the idea of grinding your own at home stems from the thought that flavored coffees might be ground on the same machines.  The grinders in the grocery are not cleaned between uses.  However, I have not found a flavored coffee bean that had gluten, so it's probably not a real concern.  For coffee that comes from a factory ground, I wouldn't worry at all.   Machines would be cleaned between flavors and nothing but coffee could be made on the machines or even in the same building ( everything made would taste/ smell like coffee). if you still have doubts - I went to the International Celiac Disease Symposium a few years back.  This is held every few years in different countries for medical professionals that study and treat Celiac.  They present research, etc.  All food served was gluten-free.  We drank a lot of plain, already ground, coffee!  A lot!   Coffee is not on any lists as a gluten containing food.  Talking legitimate organizations - not some blogger or pseudo- science website.   After all this, if you still doubt that coffee is gluten free...... Then don't drink it!  It leaves more for me!    
    • To answer some of your questions.... Non celiac gluten sensitivity does not cause any damage to the small intestine so that is not the source of the "little holes or bumps".  You need to get her records including the report of the endoscopy to see exactly what it says as well as the pathology report of the biopsies. You should always get medical records anyway & keep a copy for yourself. How many biopsies did he take? There should be a minimum of 4, ideally 6. The small intestine is very vast even in a small child. An adults is the size of a tennis court! That's a whole lot of territory so biopsies can miss damage especially when enough of them are not taken! She has 2 positives on the serum panel. This crap about "weak" positives should be thrown out of the nomenclature! A positive is a positive, weak or not! Her DgP IGG is way over the range and extremely telling. As far as my knowledge goes, there is nothing else that causes a positive DgP IGG other than celiac disease. False positives are really rare and to have 2 false positives would be astronomically rare! You are right & smart that she really does need an official diagnosis! IMHO, keep her on gluten for right now. Get a second opinion pronto & I believe you'll be able to get her a dx based on the 4 out of 5 rule if nothing else. I wouldn't think it's going to take more than a month to get to see another doc for a second opinion. Then you can take her off gluten. Kids heal up really fast, way faster than us old geezers! I'm sure as others  wake up & get on their computers they will be along to voice their knowledge. I am in the eastern time zone & rise before the birds so I was on here early. Hang in there mom! You're doing the right thing!
    • Now that my initial rage has calmed a tad.... your daughter has to fulfill 4 out of 5 of the diagnostic criteria. Second opinion can do a gene test. If positive, then she will have4 out of 5 of the dx criteria to dx without a positive biopsy. See: http://www.gastro.org/news_items/a-biopsy-should-not-be-required-to-make-the-diagnosis which says in part: The presence of signs and symptoms compatible with celiac disease. Positive serology screening (high serum levels of anti-TTG and/or EMA). Presence of the predisposing genes HLA-DQ2 and/or –DQ8. Histological evidence of auto-insult of jejunal mucosa typical of celiac disease. Resolution of the symptoms and normalization of serology test following the implementation of a gluten-free diet.   Also see: http://www.tenderfoodie.com/blog/2014/5/1/dr-fasano-on-new-gut-autoimmune-research-autism-clearing-up.html She can get a dx after her symptoms resolve on a gluten-free diet!
    • OMG!!!! The doc wants her to get sicker & sicker & do further damage so he can diagnose her? Don't do me any favors doc!!! I'm so spitting med right now I can't even speak! Find a new doc, take the records & get a second opinion. Maybe the next doc will have a freaking brain & dx your daughter. She should be dx'd! This is absurd in the extreme. The very least that should happen is the doc give her a dx now & then in a year or 2 have her do a gluten challenge & do a biopsy all over again but seriously, that would be just as cruel as what he's doing now. He's an ASS!
    • Celiac disease may lead to a host of other inflammatory, gluten-related ... Fortunately, Diet Doc offers gluten-free diet plans which are customized to ... View the full article
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