Post diagnosis

[Jherm21]

I've just recently been diagnosed with Celiacs, I have been what I think is gluten free for 4 weeks. I don't feel any better. A little less bloated but am still having d in the mornings. My main concern is dizziness. I have been dizzy before and now after diagnosis. Has anyone had this problem. I was told I was not anemic because my hematocrit and hemoglobin levels were fine but my iron saturation and ferratin were both border line deficient yet doctors say in normal range. Is the dizziness due to neurological problems or possibly sugar or blood pressure issues? Also just another topic what should I be eating to heal my intestines? I haven't ate much of a variety my diet for 4 weeks has consisted of: chicken, pork chops, steak, potatoes (both sweet and white) spinach salads with just lemon and lime as dressing and apples and peanut butter for a snack along with fruits and veggies. Oh and rice. I cut out corn products and dairy for now. Im so new at this and the nutritionist I saw was not as helpful. Any advice out there would be awesome!

[cyclinglady]

Welcome to the forum!

i think you are doing a fine job.  The only obvious thing missing is time.  It takes time to heal.  Time to master the gluten free diet.  TIme to learn about cross contamination.  Time to figure out any other intolerances you might have (and those could just be temporary).  That's it -- time.  

Only you and your doctor can rule out other isssues like blood pressure or blood glucose levels, but they could be related to celiac disease as there are over 300 possible symptoms.  

Ask any questions, we are here to help!   

[Jherm21]

I have felt so alone for the last month. I'm happy to now be involved in these forums as people with the disease are the only ones who really know how it feels. I want to know if anyone has any meal plans for someone who has just been diagnosed. For now I am staying away from processed gluten free foods until I see my doctor in a month. Also does anyone on here have thyroid problems as well? My endocrinologist was treating me for hypothyroid although my levels of tsh was between 4.5 and 5.6 for the last few months. As soon as she found out about my celiacs diagnosis she no longer wanted to treat the thyroid because she believes it will level out to normal after being on the gf diet for a while. But I am having symptoms of hypothyroid (hands and feet too cold they turn purple sometimes and slight depression and extreme brain fog! Help! I didn't have high antibodies for they thyroid panel so I am not sure what to do about my thyroid. Also my prolactin level was recently elevated to 36 which is not too high but over normal range. Any advice? 

[cyclinglady]

Even if you do not have autoimmune thyroiditis (high antibodies), your doctor should probably continue to treat your thyroid with hormone replacement.  Why suffer?    A small dose migh help you feel better while you are healing.  Retest the thyroid in six weeks to see if it is helping (or to measure if your thyroid is getting worse.   Treating your celiac disease might very well even out your thyroid.  The purple hands might be Raynauld's, another bothersome AI issue.  My kid has it.  We have invested in wool socks (we live in Southern California).  

No meal plans.  Just eat foods you like and are varied.  I use my crockpot a lot.  I cook in big batches and freeze meals.  When you feel yucky, it is hard to cook.  It will get easier!  

[Jherm21]

Thanks cyclinglady for responding, well you seem to have been right. I went to neurologist today and showed her my blue feet and she believes it is raynauds disease. What do you for that I live in MI. Brrrrr! Is it something to worry about I know you said your son has it. 

[cyclinglady]

We are still learning.  Looking at buying some heated gloves.  It is another autoimmune disorder.  Folks tend to have more than one.  My daughter's friends tease her about being a vampire. Our doctor put the pulse gadget on her finger and was shocked that she did not have a normal pulse.  Her aunt has it too.  Ai runs like crazy on both sides.  

[tessa25]

I've had Raynauds since high school. After many years with it my hands and feet never go white anymore. What I've done is increase the temperature in the house so I never get it when inside. I wear ski mittens instead of gloves when outside. My ski boots are heated. I never stand outside in the winter for long without wearing snow boots to keep my feet warm. And I never stand outside in the winter without wearing warm layers.

By the way, when my white hands start to warm up they turn blue.

[kareng]

My brother has it.  His main concession is to be careful to keep toes and fingers warm.  He doesn't take things out of the freezer with out gloves or using a hot pad, don't hold a cold drink for long periods, things like that.  Heavy socks and gloves when its very cold - maybe those little warming packs if shovelling snow.

[Jherm21]

Are compression socks good or bad for this type of problem?

[cyclinglady]

No, I do not think compression socks will help.  Keeping warm will.  This site has some practical tips:

Open Original Shared Link

[Gemini]

jherm........welcome to the forum!  I can offer up some advice on a number of issues you have as I had/have the same problems. I have Celiac, Hashi's thyroid disease, Reynaud's and Sjogren's Syndrome.  Yes, I did lose the genetic lottery, didn't I?    I have been diagnosed and strictly gluten-free for 12 years this April.  As stated by cyclinglady, time will heal things but you must realize that by time we mean anywhere from 1-3 years.  I will add that the longer I am gluten-free, as each year passes, I improve and now I feel as normal as anyone else out there without all my problems.  I am also disgustingly optimistic...which really does help.  Humor is another favorite of mine.

The dizziness was a HUGE problem for me and that can come from a number of different causes.  I mean, room upending, gotta sit on the floor kind of dizzy.  I was severely anemic at time of diagnosis and for a long time before that.  I am sure that contributed to the problem but gluten can have neurological effects on the body so that's another thing that will take time to heal. Blood sugar issues....ditto.  I had a couple of major episodes with reactions (I am not diabetic) where I passed out but it all was due to undiagnosed Celiac and every one of those things disappeared, over time, after going gluten free.  Please do not get really worried about it because these are common symptoms for many of us.  When you are not absorbing your food properly, it wreaks havoc with blood sugar.  My advice would be to eat frequent small meals with protein at every one. Get your good fats in there also but small amounts, as fat is the hardest food to digest.  Eat fruits and veggies freely, as long as they don't bother you.  Invest in digestive enzymes for awhile as they will help you to break down your food.  Your body is not doing that properly right now. Take one with every big meal you eat, in the beginning.  Make sure they are gluten-free.  I used Digest Gold from Enzymedica but they are pricey so any good enzyme that is gluten-free will do fine.  This is important advice I give to everyone.

Your doctor needs to keep treating your thyroid, while keeping track of levels much more frequently as you heal.  Your TSH is VERY high.  Anything over 2.5 is treatable thyroid disease. These new ranges are not observed by all physicians. They also need to check your actual hormone levels which are Free T3 and T4....the total number.  Press for them to do so.  Checking only the TSH is half ass medicine.  She may be correct in that your thyroid will normalize, over time, but mine didn't.  I went too long with undiagnosed Celiac and now I have a half ass thyroid.    Mine was also autoimmune, though.  Your thyroid controls metabolism so if she does not treat it while you heal, it will slow everything down.....including your healing. 

Reynaud's Disease........pain in the ass but it can be improved.  One of the biggest differences in my symptoms occurred with healing.  Over time....sorry if I keep on about that........things got better.  The blanching of my fingers and toes got less and less with time on the gluten-free diet.  You are calming your overactive immune system down so the attacks should get less frequent and milder.  After 4 years on the diet, I was energetic enough to start a rigorous exercise program.  Had to because I also have osteoporosis in my spine.  Yeah, I know, I look bad on paper but if you met me, you would be surprised that I don't look like I'm falling apart. Turns out, it was the best thing I ever did.  Exercise REALLY helped the Reynaud's symptoms. Get all that blood pumping and amazing things happen. Exercise is one the single best things anyone with autoimmune problems can do. I was too weak for the first 4 years on the diet to do much of anything but walk or hike but I do half an hour of weight training and half an hour of cardio twice a week and it has helped me build muscle I never had, improved my balance, greatly improved my mental well being...and the list goes on and on.  When you feel better and get some energy back, think about making it a way of life and you will not regret it.  I still have some symptoms with Reynaud's but much milder and not as frequent as before diagnosis, which is amazing considering I live in New England and it's cold here right now.  I actually love snow and cold and was not going to let Reynaud's prevent me from playing in the snow.  The exercise has also helped my osteo. I have not lost any height, which amazes the docs because usually, those with it in their spine lose height as they age. I will be 58 years old in June and I consider it a success!

Compression stockings are great if you have circulatory issues.  I do because I am very small and have Reynaud's. I wear them from time to time but it really doesn't do wonders for the symptoms of Reynaud's.  The exercise did and keeping fingers and toes warm.

What cyclinglady said about those stupid gadgets doctors all use now because, really, you will die if they don't know your oxygen levels these days.......she says with sarcasm........she's right!  They rarely work on me because of the Reynaud's.  So, don't think you are dying or anything because pulse or oxygen doesn't register correctly.  I give them one chance to do so and if it doesn't work then I tell them we are done.  Not many people really understand this stuff. It gets annoying.

I hope this has helped and know that you are not alone. It will get better, I promise.  Just make sure that everything you put in your mouth is really gluten free and be patient.  You may still have D because you are making small mistakes that we all make in the beginning or you are eating too much fiber and it is hard on your gut.  I would suggest taking a good probiotic to help populate your gut with good bacteria. There may not be any and that isn't helping the D. Bananas are good for binding. Cheese is also but you are cutting out dairy for now.  I get that.  I have to eat dairy lite because large doses still kill me after all these years. But I can tolerate small amounts of good cheese, thank God!  If you have any more questions, we are here to help!

[Gemini]

Geez...I didn't realize I wrote so much!  Sorry for the book but you can't always give advice in one paragraph! 

[cyclinglady]

Ha, great response, Gemini!  Tessa25 is right about keeping a warm house.  Problem for us is that I am post menopausal and am still getting hot flashes.  I like a cold house.  Bought a small heater for my daughter to use in her room.  Just bought her a down vest to wear around the house and we keep blanket throws everywhere.    Small bean bags can be nuked and she keeps them in her Hoodie pockets.  These are easy to make:

Open Original Shared Link

Obviously do not use rye, barley or wheat!  

Like Gemini, I keep up on exercising.  It does wonders physically and mentally.  

Finally, encourage family members to get tested for celiac disease even if symptom free.  So far, my daughter does not have celiac disease but we all know that could change.  

[Gemini]

2 hours ago, cyclinglady said:

Ha, great response, Gemini!  Tessa25 is right about keeping a warm house.  Problem for us is that I am post menopausal and am still getting hot flashes.  I like a cold house.  Bought a small heater for my daughter to use in her room.  Just bought her a down vest to wear around the house and we keep blanket throws everywhere.    Small bean bags can be nuked and she keeps them in her Hoodie pockets.  These are easy to make:

Open Original Shared Link

Obviously do not use rye, barley or wheat!  

Like Gemini, I keep up on exercising.  It does wonders physically and mentally.  

Finally, encourage family members to get tested for celiac disease even if symptom free.  So far, my daughter does not have celiac disease but we all know that could change.  

As another post menopausal woman, I do not keep my house warm.  Never have.  I run the thermostat at 66-67 degrees, in wintah.  I live a life of contradiction. I start to sweat if the heat is set higher than that.  I never have a problem with my hands or feet at those temps. but then again, I am so used to having cool hands and feet that it seems normal to me.  But they do not blanch at those temps.

[Jherm21]

Thanks everyone for the responses! I appreciate all the input I can get. Seems like these forums tell more than the doctor visits we pay an arm and a leg for. I always leave the doctors with so many more questions! I'm sure I'll have a ton more questions to add throughout my healing process. Is there anything sweet I could eat. Its been over a month and I'm feening for something a little sweet besides fruit. I haven't any processed gluten free food yet. Is there candy or chocolate thats 100 percent gluten free? I know sugar is not the best but my doctor did advise I get my calorie intake up ?chocolate was the first thing I thought of. 

[Gemini]

3 minutes ago, Jherm21 said:

Thanks everyone for the responses! I appreciate all the input I can get. Seems like these forums tell more than the doctor visits we pay an arm and a leg for. I always leave the doctors with so many more questions! I'm sure I'll have a ton more questions to add throughout my healing process. Is there anything sweet I could eat. Its been over a month and I'm feening for something a little sweet besides fruit. I haven't any processed gluten free food yet. Is there candy or chocolate thats 100 percent gluten free? I know sugar is not the best but my doctor did advise I get my calorie intake up ?chocolate was the first thing I thought of. 

Those little Ghirardelli squares of deliciousness are an outstanding choice.  Ghirardelli clearly marks everything for allergy content. As with everything you do now, make sure to read the labels but the caramel filled ones, both dark and milk chocolate, are to die for.  There are also the mint ones and the raspberry filled. I could sit and eat the whole bag! 

You will learn that there are no guarantee's in life for 100% gluten-free food, except anything naturally gluten-free.  That in no way means they will make you sick.  I was one of the skinny Celiac's who was 20 pounds underweight at diagnosis.  My gut was totally trashed. I really needed to gain weight so I did buy gluten-free bread and some mixes to try.  Many people advise against that but you know what?  I found that as long as I used certified or dedicated line foods, I had no trouble. I ate gluten-free bread right away, toasted. I made gluten-free brownies the third week and ate small amounts without any issues. From the moment I went gluten-free, I did not have any set backs and ever so slowly, got better. The only set back that occurred, strangely enough, was 2 years into the diet when dairy became a problem.  I think my gut was healing well and now I noticed the dairy problem. 

My advice to most is if you want the damn cookie, eat it.  If it bothers you, wait a while and try again.  The only time I got sick was when I was glutened or cc'd, due to a lack of experience.  That didn't happen too often because I HATE being sick.  Do not be afraid of food.  If you need to gain, go for some processed stuff because you will never gain weight eating whole foods only. Try the Udi's bagels, toasted with peanut butter and banana.  Or make an egg sandwich with one.  I put veggies or smoked salmon in there too......YUM!  The King Arthur line of gluten-free mixes are produced in a dedicated facility so no cc....they are safe!  The brownie, cookie and banana bread mixes are delicious!  They also have a doughnut mix but I haven't found it yet.  I think it has my name all over it......

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[icelandgirl]

Hi Jherm and welcome to the board!

I totally get how you feel.  When I was diagnosed I felt so alone in it...like no one else got it.  And then I found this board.  ?  It takes time, as everyone has said, more time than you'd think.  All my doctor told me was eat gluten free and you'll be fine.  It took quite a while to feel fine.  I'm just past 3 years since diagnosis I'm in so much of a better spot than I was in then.

Do eat a good variety of healthy whole foods, as long as they agree with you.  I found a few other things that my body couldn't handle, unfortunately.  I can do some dairy now, just not a lot.  I still can't do oats, soy, broccoli, cauliflower, Brussel sprouts or cabbage.  I miss them.  But I do eat a lot of different things.  Primarily whole foods, but I do eat some bread.  I love, love, love the Canyon Bakehouse Bagels.  Yum!  Especially toasted with Sunbutter on top.  I also bake some treats for my family and eat some too.  My favorite sweet thing t5u have on hand is Enjoy Life chocolate chips.  They are gluten, dairy, soy, etc free and so good.  I use them in waffles, cookies and for just eating out of the bag.  

I also have thyroid issues and agree with Gemini...that TSH is much too high.  It could be why you feel dizzy.  My thyroid has gone wacky a couple of times in the past few years.  The first time started with constant dizziness.  It was terrible.  It was hard to function.  By the time I went in to have it checked my TSH was over 13 and my Free T4 was below range.  It took about 2 weeks after a med increase to feel better.  I've had Hashimotos since the birth of my 1st child, he's 16 now.  Going gluten free did not fix it.  Please request a full thyroid panel.  Especially important are the free T3 and Free T4.  Your numbers should be at 50-75% of the range.  If they're not, you need some medication.  The thyroid regulates so much in your body.  Having it be off at all can really wreak havoc.  Having my TSH around 1 works best for me.

I hope some of that helps.  Keep advocating for yourself and keep us posted on how you are doing!

[frieze]

On 2/8/2017 at 0:36 PM, Gemini said:

Geez...I didn't realize I wrote so much!  Sorry for the book but you can't always give advice in one paragraph! 

Hey, Gem, there is a device that can be used on the earlobe to check O2 levels.  goes in the same machine, just a different attachment.  Because the only other option is an arterial stick for ABG's....ouch

[Gemini]

5 hours ago, frieze said:

Hey, Gem, there is a device that can be used on the earlobe to check O2 levels.  goes in the same machine, just a different attachment.  Because the only other option is an arterial stick for ABG's....ouch

But why, all of a sudden, do they need to know your O2 levels when a person clearly does not have a problem?  The minute you walk in now they have all this stuff they do and I find it annoying.  I can see for people with known medical issues affecting these numbers but they know me and they know I work out.  I figured it was the "getting near to the 60 number in a couple of years", when they treat you like a senior citizen all of a sudden.  My older girlfriends have warned me about that and I guess they are right! 

I won't say anything the next time and see if what you said comes up. Thanks for the info because I did not know that!  

[frieze]

18 hours ago, Gemini said:

But why, all of a sudden, do they need to know your O2 levels when a person clearly does not have a problem?  The minute you walk in now they have all this stuff they do and I find it annoying.  I can see for people with known medical issues affecting these numbers but they know me and they know I work out.  I figured it was the "getting near to the 60 number in a couple of years", when they treat you like a senior citizen all of a sudden.  My older girlfriends have warned me about that and I guess they are right! 

I won't say anything the next time and see if what you said comes up. Thanks for the info because I did not know that!  

don't worry about the ABG, they would never do that in the office that is really an ICU thing.   i think it is to get the pulse, more than anything.  and not a good way to do that, you can not make any judgements about the quality of the pulse.  you know, new toys, gotta use them, lol.  and they are not the best thing since sliced bread... a short tale...working one noc, LPN approached me with "Mr Jones has a PO of 96, BUT his pulse is over 100", hmm does Mr. Jones have a titrate O2 order? Yes, well go turn it up and reassess. PO went to 98 and pulse fell under 100. duh, the man is anemic....

[Gemini]

4 hours ago, frieze said:

don't worry about the ABG, they would never do that in the office that is really an ICU thing.   i think it is to get the pulse, more than anything.  and not a good way to do that, you can not make any judgements about the quality of the pulse.  you know, new toys, gotta use them, lol.  and they are not the best thing since sliced bread... a short tale...working one noc, LPN approached me with "Mr Jones has a PO of 96, BUT his pulse is over 100", hmm does Mr. Jones have a titrate O2 order? Yes, well go turn it up and reassess. PO went to 98 and pulse fell under 100. duh, the man is anemic....

Ha, Ha......toys!  I think that definitely has something to do with it.  I also think that the toys have taken some common sense out of nursing/doctoring.......at least for the more recent graduates.  They rely too much on the toys/machines.  Hospital stays have become very automated and many people I have spoken to are not that happy about the experience.  I, personally, detest that automatic blood pressure cuff.  I normally have higher BP around those white coats so the one time they used one on me, it kept alarming out.  The more it did that, the more annoyed I became....a vicious circle.  I mean, do you really need to know someone's BP every minute?  That thing ended up being removed.....

[Jmg]

20 minutes ago, Gemini said:

I also think that the toys have taken some common sense out of nursing/doctoring.......at least for the more recent graduates.  They rely too much on the toys/machines.  Hospital stays have become very automated and many people I have spoken to are not that happy about the experience.

Reminded me of this!

[Gemini]

Very good, JMG!  It's been a long time since I saw that. Monty Python were some of the best!