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3 Weeks In: Will It Ever Get Better?
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Hi,

This is my first post so I'm still getting used to the terminology/acronyms used on this site!

It's been 3 weeks as of tomorrow since I was diagnosed with coeliac disease and started my gluten-free life.

I've found it quite an overwhelming and emotional learning process (esp. as GPs seem to know nothing and haven't had a meeting with dietitian yet!)

I'm doing everything I can to avoid contamination. I'm a uni student living in a shared house, so it's difficult, but my housemates are very understanding and I've got my own separate utensils and food cupboard.

However I feel like I'm not healing at all! Half the time I wonder if I'm just getting worse!

I've cut out dairy because I can't tolerate it at all. I've also found that the processed gluten-free foods I got on prescription (gluten-free breads and pasta) make me feel sick/give me stomache aches, so I'm avoiding them.

Basically, I'm living off rice & buckwheat porridge, beans, potatoes, rice, lentils and lots of fruit and veg.

I ate pretty healthily before going gluten-free. I'm a vegetarian so have always eaten this sort of food, so I can't think that going gluten-free has been that much of a shock to my body...

But a lot of the time I'm getting awful stomach aches, nausea, 'D', constant headaches, debilitating fatigue, insomnia and brain fog and a generally angry/upset-feeling stomach. I'm also still feeling irritable/emotional a lot of the time.

Is this normal or am I intolerant to other food too? I really don't want to cut out any more types of food.

I got really underweight before the diagnosis (BMI 13/14) because my body wasn't absorbing anything (total villus atrophy & mucosa) and I feel like I'll have nothing left I can eat soon! I'm still losing weight...

I'm taking multivitamins, multiminerals, iron and calcium supplements. My bloodwork came back fine (apart from coeliac antibodies, obviously) so my nutrient levels/thyroid etc. are all good, fortunately.

What's wrong with me? This is really affecting my university work and I'm in my final year now so every day is crucial! I have an exam tomorrow and a very important field trip to South Africa in january and I'm so desperate to feel better so I can get the most out of my very expensive/important degree!

I'm currently trying to revise but I was in such agony last night and didn't sleep at all, so my brain isn't working very well. I definitely didn't eat anything with gluten in last night...I made lentil, butterbean and leek stew.

Sorry for the long moany post!

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Hannah,

You should be happy that you have a diagnosis. I know you feel awful and it is overwhelming. I think most of us go through this. I found out in April and I was misearable just like you. In my case it has taken a long time to feel better. It is now 7 months later, and I have to report that I feel about 70% better, but i have more to go.

Celiac disease has a momentum to it. It does not just magically clear up, regardless of how hard you try. It may take up to a year to feel like your old self. The hardest part for me was to understand that notion. If you are constantly questioning the disease, or asking why am I not feeling better yet, you are just spinning your brain in knots. I have done plenty of this but I can now look back and say that I am feeling better. I think you will will too.

Focus on eliminating the gluten at first. Also try dairy, as that is easy to avoid and has a big impact. Not just milk, look for anything with Lactose in it. When you think you have stabilized, you can start to explore other foods. I will say that early on, you will have no way to know whether it is a certain food, celiac, lack of sleep, depression, anxiety, etc. It is hard to diagnose when the food test and results are so hard to match up with each other.

Just know that you are headed in the right direction, keep your vision on a future where you know you feel better, and you will get there.

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patience , luv, patience with your self and your body. Give your body the time it needs to heal.

Celiacs is a journey not a sprint . The road ahead of you may be a long one , just keep headed in the right direction and you will be well.

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I think you are experiencing withdrawl symptoms. I am sorry you are going through that, but I feel hopeful you can overcome it with time. I am not sure if you realize that withdrawl is overwhelming and physically takes alot out of you. You can feel emotional because of it also. Some of my worst days of this were followed by my best days, so perhaps soon you will have some higher highs soon. If you are supersensitive you may getting cross contamination that will bother you. .I recently dealt with discovering my buckwheat was tainted with wheat and corn. It is hard at first to know if it is withdrawl symptoms or cross contamination. I have been surprised how effective my body is at rejecting gluten. Before I went gluten free I could not tell what was making me so tired.

I have found that meat and eggs are the best foods for me. Fruits and even vegetables I have intolerances too.

To optimize healing I have been checked by blood test for food intolerances. You can often substitute new foods for old ones and it is easy to do. Also, you can learn to rotate foods to only eat them every four days. Thus you can have atleast eat some of your favorites that you do not tolerate well. I took a nutrient absorption test, and began to supplement accordingly. I would say you need some down time; however you, like most people, can't take all you want. Do your best. Since you are vegetarian you likely need Vitamin B 12 if you don't already. Without it I am fatigued and numb.

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Try eating more good fats, coconut oil/milk, avocados, olive oil, nuts, uncontaminated chocolate. How about some eggs ?

From your symptoms, I would guess you are still getting cross contaminated somewhere. Sometimes this can be from just one item, and it nearly drives you crazy :ph34r: until you figure it out. I don't know how accurate your gluten free labeling is over there... you really need to avoid processed wheat starch, which might be what is bothering you in the pre- processed stuff. Be sure to pick over carefully and rinse really well your beans and lentils before cooking. Is your buckwheat cereal truly gluten free ? And, you could be one of the minority who also reacts to even gluten free oats, so it's best to avoid oats until you are healed. I had to switch out a lot of brands because I didn't realize I was sensitive to things processed in the same facility with oats, and I have really restricted pre made "bread" products to just a very few sources which have dedicated facilities and don't use that ingredient. I also had to change brands of chocolate. Go figure, the supposed high quality, gluten free chocolate now got processed in the same facility with barley, so that was "bye-bye," and the other one that is supposed to be safe was giving me headaches, but I found one brand of over the counter, regular candy bar that is loaded with ingredients but doesn't seem to bother me. (I try to eat as "plain" as possible, the fewer ingredients, the better.)

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Welcome to the forum! I would definitely also check your shampoos, makeup, lotion, toothpaste and anything else that will go near your mouth - they can contain gluten too. Not sure if you have pets or not but my dog's food as well as his cookies are filled with gluten, so you have to be careful with that too. But like others said, keep in mind that 3 weeks in may be a little early to start feeling some relief - many of us feel worse before we feel better - I know that was the case with me. I'm 7 months in and still battling some issues. Hang in there!

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I found it helpful to write down my symptoms at my worst and then every few weeks. I found there were lots of small improvements I hadn't really noticed and if felt better to see the difference in front of me.

Keep at it, and keep coming here

Happy healing

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Welcome Hannah!

You've already got some great suggestions - YES it will get better given time. Time gluten-free is often the most important factor. Your body needs time to heal all the damage caused in your small intestine - your body will work hard to accomplish this and may leave you tired - especially in the early days.

Because you mention you have total atrophy and your diet hasn't changed much I thought I'd point out you are eating many foods that can be very tough to digest with a severely damaged "leaky gut". You may want to research high lectin foods.

I also had total villous atrophy and I did not improve until I removed all high lectins. Buckwheat, beans, rice, potatoes, lentils all contain high lectins. Foods in the groups of dairy, grains, legumes, nightshades, eggs, nuts and seeds are all possible problems. Being vegitarian is really tough if this is your problem as it is tough to get enough protein without nuts and legumes.

If you want to test this try eating only fruits and vegies (no nightshades) for several days to see if you improve. A week to ten days would be best but without meat or fish it will be difficult to get the protein you need.

Let me know if you try this -it can be very tough - but not as hard as being ill each day.

Hang in there - it absolutely does get better -- oh make sure you keep a list - maybe on your frig of even the smallest improvements in the coming days...the first on my original list was slightly less bloating - nails, hair and skin all looked healthier. Reinforcing the minor improvements as they happen is important because this is a marathon, not a sprint!

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Thanks very much everyone for the support and advice! I'm seeing a dietitian tomorrow so hopefully I can talk through my concerns with her too.

As a vegetarian who is now gluten, oat and lactose-free and avoiding processed gluten-free products (and I don't eat nuts/seeds because I really hate them), I'm really reluctant to cut out any vegetables, pulses, rice or beans! I would have nothing left! I would also definitely waste away, considering the state my body is in as it is....

I'm very careful with labels and have been only eating specifically gluten-free food. I'm being as careful as I possibly can be regarding cross-contamination, so hopefully it is just gluten withdrawal and will pass? But atm I feel like for every day I feel good I get several days of feeling awful...

Thanks again for being so kind everyone. I'm feeling more positive today. When I was first diagnosed I was really quite happy in a way (well, more relieved than anything!) and keen to start my gluten-free life. But it's definitely an up-down rollercoaster of a journey, that's for sure!

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Those are all great ideas above. Let me add one that I think wasn't there. Keep track of what you eat and how you feel in a food/symptom diary. Keep track of not only what it is, but what brand or what source. Some foods are processed on lines where gluten containing items are also processed and that can cause cross contamination. Some celiacs have more problems with cc than others. It is really too early to know whether you are still healing, or if you are one of the more sensitive ones. If you keep track of your foods and their sources you may find that certain ones bother you and certain ones don't. It makes it more simple to figure out if you keep changes to only one every few days to a week.

The journal will also help you to determine if you have another food intolerance. You can eliminate a food for a few days to a week and see if you feel better or not. Then you add it back if you didn't see a change and see if that does anything. Then move on to the next food.

I am one of the more sensitive ones, and it took me awhile to learn about and eliminate all the cc sources. You need to be patient. It can be quite a roller coaster as depression and anxiety are included in my glutening symptoms. Take care of yourself.

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Don't forget to check medications and supplements for gluten, and, soy and dairy if they are bothering you

Colleen

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I saw the dietitian today but I'm not sure how helpful she was. She was only interested in making me try to figure out exactly what I had eaten over the past week in epic detail, which I found quite difficult. I found her quite demanding and a little terrifying/overwhelming to be honest!

She didn't really listen to my concerns about feeling ill a lot of the time. She told me that I should be feeling better now that I'm gluten-free and so I must have IBS as well, and to get tested for this. She told me that it couldn't be related to coeliac disease because I'm not eating the gluten so should be healing...

She then prescribed me high-cal fresubin drinks to try and get my weight up. I understand that she has to be focused on getting me to a safer weight, but I wish she had listened more to my other concerns too! I don't really know what to think of it all...

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I'm sorry you had a poor experience with the dietician. I've never seen one, but my mother has and she was not impressed. I guess like everything, there are good ones and bad ones.

(Plus I'd love to know how one gets "tested" for IBS since it's a diagnosis of exclusion. They don't know what's causing your bloating and cramps, it gets labelled IBS... just a pet peeve of mine).

I had about 2 months of persistent, annoying symptoms when I first went gluten-free. They tapered off and resolved by 3 months, and I kept falling just a bit better week after week from that point on. It takes time (unfortunately!) So you may need to wait another month or two to really know if you have another food intolerance.

Now, my next bit of advice likely isn't going to be popular, but my personal opinion is that you might want to consider eating meat in the short term, at least until you have regained some weight and healed. Humans are meant to be omnivores (as we can tell from our teeth), and a lot of the protein sources you identified as being part of your diet can be troublesome for some people (as a pp noted). Your BMI is so low, it's a matter of doing whatever you can to try to heal and gain weight. I'm not sure if eating meat in the short term (fish, chicken) is something you'd consider? IMHO, dealing with a serious medical issue supercedes dietary preferences/beliefs.

Whatever you choose to do, good luck!

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Hi Hannah,

Welcome to the forum! :)

Three weeks is a good start on the gluten-free diet. But it is still just a start. Your body can't absorb nutrients properly when the villi are damaged by celiac disease, so you may be low in some. Especially the fat soluble vitamins. After going gluten-free your body will start to wind down the immune system attack on you gut. That will give it a chance to start healing. However if you are missing vitamins and proteins needed to build the new tissue it may be a slow processt to rebuild. Taking extra vitamins can help some, but the real fix is for the gut to heal so it can absorb them. Every time you get a small amount of gluten in your food, the immune systm is kicked up a notch and starts attacking again. That immune response can take weeks or more to settle down.

Some people with celiac also develop additional food intolerances beyond wheat, rye, and barley. Nighshades (potatoes, tomatoes, peppers, eggplant), soy, corn, oats, eggs are some of the ones that people on this forum report. So it can be somewhat difficult to get proper protein in your diet if you are vegetarian and also develop a range of additional food intolerances. Something to think about.

Your dietician is not very celiac aware. Healing is very individual and can take years for some people. For others it can go quickly tho. Younger peolpe generally heal faster. Try limiting sugar and starch in your diet and taking pro-biotics.

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

Get tested before starting the gluten-free diet.

Get your vitamin/mineral levels tested also.

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 gluten-free vitamins.

Take digestive enzymes.

Avoid dairy.

Avoid sugars and starchy foods.

Avoid alcohol.

Helpful threads:

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.celiac.com/articles/23033/1/Non-Celiac-Wheat-Sensitivity-It-Exists/Page1.html

Thread For gluten-free, Dairy, Soy, Corn And Nightshade Free Recipes

Super Easy Meal Ideas Anyone?

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Hi Hannah,

I feel for you. This is my first post :). I eliminated gluten for two weeks to see if I felt better and boy was I in for a surprise. Family came into town so I strayed along with Thanksgiving and became very sick. They were the same symptoms I've had for years but more pronounced. I am almost two weeks back on gluten-free as unbeknownst to me previously, I have a serious problem and believe this is the explanation for my recurring anemia and vitamin deficiencies. But whoa - it seems there is NO going backwards!! What a trip this is turning out to be.

At this point, I am beginning to notice the sequence of symptoms that occur when I eat something of which I'm intolerant. Read the labels on the gluten-free products and keep the ones you know are safe around for emergencies (instead of starving). Personally, I'd rather starve than poison myself so this is what I've begun to do.

The app NxtNutrio has taught me a lot. It has a barcode reader so you can scan products after setting your profile up with your allergies and conditions and it will list the ingredients that you should avoid. I've learned a lot from just using this app.

Also, there's a book by Linda Page called Healthy Healing. It lists supplements that help the symptoms a bit plus suggestions on what to eat. There are so many articles out there. One that I read was about what to eat during a flare and I did find that eating a lot of protein helped.

www.mindbodygreen.com is a great blog that focuses on good health. It gets me excited and keeps my spirits up. I keep it in flip book and receive their emails.

Look, I'm with you on wanting to fast forward to feeling better. The other posts are very encouraging and helpful. I'm really looking forward to getting into the grove so that I don't have to be plagued all the time with "what can I eat?!" and feeling ill

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I accidentally hit post so hopefully this will be approved by the moderator too :)

Anyway, good luck to you on this very tricky journey! Thanks to all the encouraging members here.

Blessings,

Cali

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Thanks so much again for the help and support guys, it's such a relief to know there are others out there in the world with the same experiences as me! I will definitely take up your advice (except I'm sorry, but I really won't eat meat! I get a lot of protein from other sources though like beans and buckwheat and these fresubin drinks).

I had a bit of a stressful day today! I got a call from the surgery this morning saying I had been booked in for an urgent blood test that morning, but no one knew why! So I turned up at the surgery very confused and asked if I could see my gp before the blood test, but they said he wasn't in and they would get him to ring me.

So I went for the blood test (for which they had no referral notes) and left the surgery feeling very confused! Just as I was leaving I got a call from the gp. He said that the nutritional supplement drinks I have been surprised could cause my malnutritioned body to go into shock and cause my livers and kidneys to fail, potentially resulting in death, so they had to monitor my blood levels to test for this :S. He then said that I have been prescribed high-dose micronutrient/vitamin tablets to try and combat liver/kidney failure and to return to the surgery to pick them up. I hadn't been told any of this, and no-one at the surgery seemed to know what was going on!

Anyway, I now have a bag full of vitamins/nutrient tablets that I have to take a ridiculous amount of several times a day along with these nutritional drinks. I'm really quite scared now, especially considering these drinks might be really harming me!

On the plus side, these last few days I've felt quite a lot better, although have been experiencing annoying 'C' and bloating, but less of the pain and headaches etc. :).

I'm still not really happy with the dietitian (especially now after she didn't warn me in advance about the blood tests or extra nutrient pills!) but I'll see how next week's appointment goes...

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Oh Hannah-

So sorry your experience with the nutritionist has not been good. I only saw one for a single visit after my Celiac diagnosis - she - affiliated with a major celiac center was of no help to me. I had already learned the "helpful" facts she knew. Live and keep learning while you use the knowledge that "some" of these professionals can provide.

If you are indeed seeing her next week - make sure you start the conversation with how disappointed that you are that she did not give you the proper information to go with your nutritional drink. If she doesn't apologize and answer YOUR questions...time to replace her. I like to give folks a chance to rise up and prove that a bad appt was an off day for them -- no need to stick with someone if they don't improve when given a second chance.

Glad to hear you are feeling a bit better -- hang out...click a few of the links GFinDC provided and let us know if we can help further.

Oh...my last post wasn't meant to persuade you to eat meat -- just know how hard it can be for a vegetarian to have to consider giving up more and more of their protein sources.

Hang in there :)

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Oh Hannah-

So sorry your experience with the nutritionist has not been good. I only saw one for a single visit after my Celiac diagnosis - she - affiliated with a major celiac center was of no help to me. I had already learned the "helpful" facts she knew. Live and keep learning while you use the knowledge that "some" of these professionals can provide.

If you are indeed seeing her next week - make sure you start the conversation with how disappointed that you are that she did not give you the proper information to go with your nutritional drink. If she doesn't apologize and answer YOUR questions...time to replace her. I like to give folks a chance to rise up and prove that a bad appt was an off day for them -- no need to stick with someone if they don't improve when given a second chance.

Glad to hear you are feeling a bit better -- hang out...click a few of the links GFinDC provided and let us know if we can help further.

Oh...my last post wasn't meant to persuade you to eat meat -- just know how hard it can be for a vegetarian to have to consider giving up more and more of their protein sources.

Hang in there :)

I managed to get her email address and sent her a long email explaining how upset I was and introducing some new questions. She apologised for me being kept in the dark but skipped over my questions as if she hadn't read them at all... She then said to contact her if I had any more enquiries before our next meeting on wednesday, so I sent her another email with some questions and got an out-of-office reply :/

I'm feeling consistently awful since starting the nutritional drink and micronutrient regime. Fatigued, nauseaus and awful muscle fatigue! It's so frustrating because I was just starting to feel better! I really don't want to continue with the drinks but I know she's going to prescribe me a higher dose when I return...

Thank you so much for being so kind :)

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Hannah~

I am newly diagnosed, and here is what I have learned in the last two months;

1. Call a support group--its so helpful to hear a voice that has been threw some things and had some of the same symptoms that I am sure you have. Its a relief to know one is not alone and that people go on to live happy lives oftentimes.

2. Get an iPhone and download Myfitnesspal (customizable calorie and nutrition tracker), Foodily (recipe ideas that can be preset for gluten free ideas), and SHOPWELL (allows you to scan barcodes and will tell you if the item contains gluten) you have to watch though, sometimes it will err on side of caution and give you a false positive.

3. If you are religious, share what you are going through with some people that can pray with or for you.

4. Be patient. I too tried to accelerate things with a nutritional drink and nearly killed myself with it. My body began going into shock as you mentioned. I haven't had one since. Don't let yourself get dehydrated either.

5. Be a picky reader. Some of the websites, threads, and blogs will terrify a person. Most of it is just noise. Pay attention to YOUR body and YOUR symptoms and keep that two way dialog with your HCP going. If you don't have a celiac specialist, I am told one should have one. I plan to get a referral to one soon.

Sounds like you are on the proactive path like me! Good luck.

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Hannah~

I am newly diagnosed, and here is what I have learned in the last two months;

1. Call a support group--its so helpful to hear a voice that has been threw some things and had some of the same symptoms that I am sure you have. Its a relief to know one is not alone and that people go on to live happy lives oftentimes.

2. Get an iPhone and download Myfitnesspal (customizable calorie and nutrition tracker), Foodily (recipe ideas that can be preset for gluten free ideas), and SHOPWELL (allows you to scan barcodes and will tell you if the item contains gluten) you have to watch though, sometimes it will err on side of caution and give you a false positive.

3. If you are religious, share what you are going through with some people that can pray with or for you.

4. Be patient. I too tried to accelerate things with a nutritional drink and nearly killed myself with it. My body began going into shock as you mentioned. I haven't had one since. Don't let yourself get dehydrated either.

5. Be a picky reader. Some of the websites, threads, and blogs will terrify a person. Most of it is just noise. Pay attention to YOUR body and YOUR symptoms and keep that two way dialog with your HCP going. If you don't have a celiac specialist, I am told one should have one. I plan to get a referral to one soon.

Sounds like you are on the proactive path like me! Good luck.

if you find a celiac specialist please let me know. I ( as of yet) have not experienced a doctor who I would consider a celiac specialist.

To me,,a specialist is someone who knows more about celiac than I do. Has not happend so far,,,,,,,So I am content in finding a doctor who is willing to run the tests I ask for , who has an open mind, someone that has at least a hint of comprehension as to the daily trial that is my life and who will actually listens to me when I talk .

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Have your carefully checked that nutritional drink for gluten contamination?

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