Help! Six months gluten free and sick again

[Hollybee]

Hi all, 

Never posted here before, but I could use some words of encouragement. I am a 35 year old woman, diagnosed about six months ago via blood testing and endoscopy. Antibody levels were through the roof. Getting the diagnosis took almost 18 months and I was very, very unwell for all of them.

Immediately after the diagnosis I changed to a really strict gluten free diet, though my husband and kids do still eat some gluteny foods in my house. They are all helpful and supportive, and my kids do their very best to follow the new rules. I'm pretty sure I'm doing well with cross contamination (replaced most of the kitchen stuff, have my own toaster, everything is labeled, gluten is only prepared on one counter that my food never touches, etc.). I rarely eat out, honestly am kind of afraid too, and have mostly stuck with places that are totally gluten free. Mostly, I eat at home.

The first month of the diet was awful, with terrible withdrawal and little improvement. Removed dairy and finally started feeling better. For the first time in a long time I felt hopeful about getting healthy. Then at about the four month mark symptoms started creeping in again. This time there has been fewer GI issues, but over the last two months I have become incredibly exhausted, reflux seems to be back, red, dry eyes, throat and ear irritation, headaches, some sore joints, clumsy with my hands, horrible brain fog and my words get messed up sometimes (not too bad, only I notice it), and awful anxiety. I had all of these prediagnosis, but now am also getting tingling and spasms in my muscles. In the last two weeks or so morning nausea has come back too. I have lost about 30 lbs in the last two years, about ten in the last two months, and cannot afford to lose much more weight.

I do have an underactive thyroid, but have never been diagnosed Hashimoto's. Went to Dr. yesterday and they are doing a ton of blood tests and Friday I am having an MRI of my brain to compare to one (normal) I had about a year and a half ago because of some wierd visual changes that started when I got sick. The vision stuff has never resolved, but the neurologist wasn't concerned at the time. I've had my B vits tested recently and they were fine and all of my other vitamin levels were good or very, very slightly low at diagnosis (zinc and copper). Also had my celiac antibodies tested a couple weeks ago and they had gone down a lot. The blood tests being done currently include thyroid panel (still no antibody test) and an ANA (never done before) among others, and the MRI is to look for MS or anything else nasty, I assume.

So, the point of this long (sorry) story is that I am looking for any input from you smart people. And I'm really, really scared I have cancer or another autoimmune problem like Lupus or MS. I feel like I'm never going to get healthy and I'm getting quite depressed. None of this is helping the anxiety I've developed through the litany of medical tests I've had, the doctors who dismissed me as being a hypochondriac, fearing I'm going to not be around to take care of my little ones, etc. The MRI in particular is really scary for me and I hate having to be in that #$@& machine on top of it. I was so happy to be feeling better this summer and now... Not so much. I'm just having a hard time dealing. 

If anyone has any advice I would love to hear it. If not, at least I got to get it off my chest a bit, right...

Thanks in advance!

 

[cyclinglady]

I am sorry that you are struggling.  You sound normal for someone who has celiac disease.  Your antibodies are coming down and you have seen some progress.  Congratulations!  

Six months.  Did you know that most celiacs take a year or longer to heal?  It takes time to really master the gluten-free diet.  Mistakes or accidental cross contamination is common.  It took me over a year to heal and I already knew the diet well because hubby had been gluten free 12 years before my diagnosis!  I found that I had issues with things that never seem to bother him like Xanthan Gum which is found in so many commercial gluten-free grain products.  I also had some food intolerances.  Some resolved over time and some did not.  I felt much better when I gave up legumes and grains.  I gave them up because they are high in carbs and I had a serious issue with insulin resistance.  Me.  A thin person with celiac disease!  Of course I do indulge occasionally, just not on a regular basis.  

I wonder why they do not run the thyroid antibodies tests.  Autoimmune thyroid (e.g. Hashimoto’s) can start (mine did) long before your thyroid stops functioning.  It is commonly linked with Celiac Disease.   I started taking thyroid hormone replacement (tiny dosage) in an attempt to keep my thyroid from burning out.  My doctor and I were sad that it did not work.  However, being gluten free (or perhaps calming my celiac disease) has shrunk my thyroid to normal size and I no longer have nodules.    My thyroid is ruined, so I  take a hefty dosage of thyroid replacement now.  If you are already hypo and being treated with thyroid replacement, it could be why they do not measure your antibodies.  But Hashimoto’s can have hypo or hyper swings.   I like to know where I stand!  

Look to your diet.  You might be getting gluten exposures.  Like kisses from hubby or from little ones.  Jebby, an old member (you can read her blog and posts by using the search button), was getting gluten exposures from her small children.  Jebby is a neonatologist (preemie Doctor) who has celiac disease.  She banned gluten from her house.  

Of course, only you can decide if making your home gluten-free is best for you and your family.  Mine is.  Our kid gets her gluten fix while at school or friends.  She is healthy (tested twice now for celiac disease).    We focus on non-processed foods.  Sick people come first in our house.  Besides, I was too ill to worry about safe kitchen practices.  

Finally, I have 3 autoimmune disorders.  Other than thyroid hormone replacement I take no drugs.  I treat myself with good food, exercise and me time.  I might have another AI brewing.  Who knows?   I just move forward.  Frankly, I have  been feeling great.   Concentrate on healing from celiac disease and all your other issues might go away.  Take one step at a time.  

Edited October 3, 2019 by cyclinglady

[Ennis-TX]

This disease always changes with symptoms like a chameleon, first thought to me is a issues I ended up getting, with Gluten Ataxia and you ended up exposed to gluten. The MRI they do they can check for spots that identify the brain damage from it..it does heal but at a much slower rate then your intestines.

Other thoughts could be sudden dip in a nutrient like Magnesium, B-vitamins etc. Do note doctors do not check full spectrum here and they base it on a value that varies from person to person so you might benefit from temporary supplementation until you heal a bit more or bounce back.

I second you should go whole house gluten-free...my family cheated and kept bringing in gluten into the house....I took precautions but often got glutened a once or twice a week. But these were from issues like them using my cooking equipment, using loose flour liberally to bread things in the kitchen (it goes air borne you inhale it then slide down and ingest it..it also settles on everything as a dust), I sometimes forgot to put butcher paper down on the counter for my food prep and got CCed, or even found that they would open fridge door/turn on water facets with flour/gluten residue on their hands then I got CCed that way touching them then my food (I got to the point of of turning and leaving the water running while I cooked and leaving the fridge open when I started prep back then along with liberal use and changing of gloves)  Do note my mother was old  school and Hispanic so scratch cooking happened often I ended up getting my own place and the whole house is gluten-free.

[Hollybee]

4 minutes ago, Ennis_TX said:

This disease always changes with symptoms like a chameleon, first thought to me is a issues I ended up getting, with Gluten Ataxia and you ended up exposed to gluten. The MRI they do they can check for spots that identify the brain damage from it..it does heal but at a much slower rate then your intestines.

Other thoughts could be sudden dip in a nutrient like Magnesium, B-vitamins etc. Do note doctors do not check full spectrum here and they base it on a value that varies from person to person so you might benefit from temporary supplementation until you heal a bit more or bounce back.

I second you should go whole house gluten-free...my family cheated and kept bringing in gluten into the house....I took precautions but often got glutened a once or twice a week. But these were from issues like them using my cooking equipment, using loose flour liberally to bread things in the kitchen (it goes air borne you inhale it then slide down and ingest it..it also settles on everything as a dust), I sometimes forgot to put butcher paper down on the counter for my food prep and got CCed, or even found that they would open fridge door/turn on water facets with flour/gluten residue on their hands then I got CCed that way touching them then my food (I got to the point of of turning and leaving the water running while I cooked and leaving the fridge open when I started prep back then along with liberal use and changing of gloves)  Do note my mother was old  school and Hispanic so scratch cooking happened often I ended up getting my own place and the whole house is gluten-free.

I'm considering abolishing the shared kitchen. There is no gluten flour in my house. I did ban that at least! Breaks my heart a little, because I used to love making homemade bread. I just don't get the same joy from making a gluten free loaf, cause there's no kneading! At the very least, I am definitely going have to think about how we're handling food and double check to make sure no one is using things they shouldn't. 

I have a GI apt next month and they do a much better vitamin screen, which could turn up something that has changed since my diet did too. I will keep that info about the white spots in mind. Thank you! 

[Hollybee]

2 hours ago, cyclinglady said:

I am sorry that you are struggling.  You sound normal for someone who has celiac disease.  Your antibodies are coming down and you have seen some progress.  Congratulations!  

Six months.  Did you know that most celiacs take a year or longer to heal?  It takes time to really master the gluten-free diet.  Mistakes or accidental cross contamination is common.  It took me over a year to heal and I already knew the diet well because hubby had been gluten free 12 years before my diagnosis!  I found that I had issues with things that never seem to bother him like Xanthan Gum which is found in so many commercial gluten-free grain products.  I also had some food intolerances.  Some resolved over time and some did not.  I felt much better when I gave up legumes and grains.  I gave them up because they are high in carbs and I had a serious issue with insulin resistance.  Me.  A thin person with celiac disease!  Of course I do indulge occasionally, just not on a regular basis.  

I wonder why they do not run the thyroid antibodies tests.  Autoimmune thyroid (e.g. Hashimoto’s) can start (mine did) long before your thyroid stops functioning.  It is commonly linked with Celiac Disease.   I started taking thyroid hormone replacement (tiny dosage) in an attempt to keep my thyroid from burning out.  My doctor and I were sad that it did not work.  However, being gluten free (or perhaps calming my celiac disease) has shrunk my thyroid to normal size and I no longer have nodules.    My thyroid is ruined, so I  take a hefty dosage of thyroid replacement now.  If you are already hypo and being treated with thyroid replacement, it could be why they do not measure your antibodies.  But Hashimoto’s can have hypo or hyper swings.   I like to know where I stand!  

Look to your diet.  You might be getting gluten exposures.  Like kisses from hubby or from little ones.  Jebby, an old member (you can read her blog and posts by using the search button), was getting gluten exposures from her small children.  Jebby is a neonatologist (preemie Doctor) who has celiac disease.  She banned gluten from her house.  

Of course, only you can decide if making your home gluten-free is best for you and your family.  Mine is.  Our kid gets her gluten fix while at school or friends.  She is healthy (tested twice now for celiac disease).    We focus on non-processed foods.  Sick people come first in our house.  Besides, I was too ill to worry about safe kitchen practices.  

Finally, I have 3 autoimmune disorders.  Other than thyroid hormone replacement I take no drugs.  I treat myself with good food, exercise and me time.  I might have another AI brewing.  Who knows?   I just move forward.  Frankly, I have  been feeling great.   Concentrate on healing from celiac disease and all your other issues might go away.  Take one step at a time.  

Hi. Thank you for the helpful words. I wrote a different reply but for some reason it didn't post. Anyway, this is good advice. I take a thyroid replacement too, just not sure if it's autoimmune. Seems likely though. I will work on doing what I can to heal the celiac. The neuro issues are the part that scares me the most, but hopefully I'll have some more info soon. 

[DebJ14]

I am so sorry you are dealing with this.  Sounds like my story about 11 month after going gluten-free/CF back in 2007.  I was feeling great until Thanksgiving rolled around.  As I prepped the gluten-free Thanksgiving dinner the day before the holiday, I was of course tasting everything to make sure the seasoning was OK.  As the day wore on I felt worse and worse.  Thanksgiving morning I felt so bad I could not get out of bed.  Our son cooked the turkey and reheated all the sides I made. I knew it was not gluten, since it had not been permitted in my house since the day I was diagnosed and it was a good thing too because my husband and son both tested positive as well.

 The next day I called the doctor in despair.  He told me to come right in and they did a blood draw for an Elissa test for food sensitivites.  It turned out I was highly sensitive to baker's yeast (it was in the thousands), and cranberries, cinnamon, black pepper, were just a few of the foods I was reacting to. Of course it was the gluten-free stuffing, pumpkin pie and cranberry sauce that made me feel so sick.   The doctor asked what we planned to have for Christmas and I said Prime Rib.  He said to choose something else since I tested highly positive for beef. 

The doctor said that when we eat gluten our immune system spends all its time dealing with that.  When it is no longer challenged by gluten it can go after other foods too.  I was taken off of all 20 foods that I tested at least moderately positive to for a full year.  Then, I added them back one at a time.  I have never been able to add yeast, (or fungus of any kind) beef, blueberries, tea or black pepper back into my diet, but I can occasionally have chocolate, cinnamon and cranberries with no reaction. 

I had the Spectracell test for micronutrients run every 6 months as my need for vitamins and minerals changed a whole lot as my gut healed.  After a couple years when my 25 ohd, B12, and antioxidant levels were still extremely low I had epigenetic testing done.  It turns out those were all low due to genetic mutations.  I was put on very high doses and will have to remain on high doses the rest of my life just to bring them up to the low end of normal. 

The doctor who diagnosed me was, and still is, a nationally recognized expert in gluten issues.

[KHB]

I had immediate improvement on the gluten free diet. After four months, I started experiencing symptoms, mostly GI. I was very sick for over a year. I read an article about common food allergens  and discovered I was eating four common allergens for breakfast every morning. I stopped eating breakfast for a week and got better. My GI sent me to an immunologist to confirms allergies. Turns out that I was allergic to three of the breakfast foods and many more. All foods that I’d never had previous problems with. Most of the allergies went away within four years, and all were gone after 10. You might want to see an immunologist. Also, I have an under active thyroid.

[Hollybee]

7 hours ago, DebJ14 said:

I am so sorry you are dealing with this.  Sounds like my story about 11 month after going gluten-free/CF back in 2007.  I was feeling great until Thanksgiving rolled around.  As I prepped the gluten-free Thanksgiving dinner the day before the holiday, I was of course tasting everything to make sure the seasoning was OK.  As the day wore on I felt worse and worse.  Thanksgiving morning I felt so bad I could not get out of bed.  Our son cooked the turkey and reheated all the sides I made. I knew it was not gluten, since it had not been permitted in my house since the day I was diagnosed and it was a good thing too because my husband and son both tested positive as well.

 The next day I called the doctor in despair.  He told me to come right in and they did a blood draw for an Elissa test for food sensitivites.  It turned out I was highly sensitive to baker's yeast (it was in the thousands), and cranberries, cinnamon, black pepper, were just a few of the foods I was reacting to. Of course it was the gluten-free stuffing, pumpkin pie and cranberry sauce that made me feel so sick.   The doctor asked what we planned to have for Christmas and I said Prime Rib.  He said to choose something else since I tested highly positive for beef. 

The doctor said that when we eat gluten our immune system spends all its time dealing with that.  When it is no longer challenged by gluten it can go after other foods too.  I was taken off of all 20 foods that I tested at least moderately positive to for a full year.  Then, I added them back one at a time.  I have never been able to add yeast, (or fungus of any kind) beef, blueberries, tea or black pepper back into my diet, but I can occasionally have chocolate, cinnamon and cranberries with no reaction. 

I had the Spectracell test for micronutrients run every 6 months as my need for vitamins and minerals changed a whole lot as my gut healed.  After a couple years when my 25 ohd, B12, and antioxidant levels were still extremely low I had epigenetic testing done.  It turns out those were all low due to genetic mutations.  I was put on very high doses and will have to remain on high doses the rest of my life just to bring them up to the low end of normal. 

The doctor who diagnosed me was, and still is, a nationally recognized expert in gluten issues.

I hope you are feeling much better now.

Perhaps I will ask about the food allergy and intolerance testing at my gastro appointment next month. It's so disheartening to think you have finally found a solution, and then realize it is not nearly so simple. I'm glad to hear you were able to find some answers though!

If you don't mind me asking, were your intolerance symptoms the same as the same as the Celiac symptoms? Were they at all neurological? I've just been having so many wierd nerve and muscle things going on, and lightheadedness... I'd love to think there may be a light at the end of the tunnel, so to speak.

You are so lucky to have a doctor that knows about this disease! Hopefully someday they will all have enough information to take care of us all!

[DebJ14]

You will probably get nowhere with the gastro regarding the other tests for food allergies and sensitivies and the epigenetic testing.  You will need to find a good functional medicine practitioner for that.

Many of my symptoms from the food intolerances were the same as before I went gluten-free.  I call it my tilt, but I could not walk a straight line.  I also had gut pain, numbness and tingling in my fingers, joint pain and my lovely rash returned.  

Sadly, since I was 54 when diagnosed, my tilt is still with me and I will die with it.  When going for a walk I have to have someone with me to walk along the curb.  Otherwise, I would tilt and fall over.  If I ever got stopped by a cop during a DUI crackdown, I would have big problems because I would fail the sobriety test, although I would pass the breathalyzer since I don't drink.

But, at least, even with all the food issues I have still not had a migraine headache in the 12 years since I went gluten-free.

[cyclinglady]

A GI can test you for basic vitamin and mineral deficiencies.  I can say that most of those resolve on a gluten free diet and a healed small intestine. For example, I was iron-deficient and supplemented for a few short months per my doctor.   Since then, I take no additional supplements because they are not medically necessary for me.  I have healed based on a repeat endoscopy and biopsies.  My GI continues to monitor me each year to insure that I remain dietary compliant.  During that repeat endoscopy, I was diagnosed with autoimmune gastritis that may eventually require me to be on b-12 shots.  For now, I can absorb b-12 thankfully.  I also have Hashimoto’s. So, not everything is due to celiac disease.  

Neurological issues, if attributed to celiac disease, usually takes the longest to resolve (if you are lucky).  Most member report needing a few years.  Yes, years!   

I do see a board certified allergist due to IgE allergies.  But my allergies have really calmed down since my celiac disease is in remission.  Healing from celiac disease has calmed down my other autoimmune disorders.  

Everyone is different on their paths to healing.  If I have  learned anything, it is that researching and working with a good doctor is the key to good health.  

 

Edited October 8, 2019 by cyclinglady

[Connie Hess]

On 10/3/2019 at 2:34 PM, Hollybee said:

Hi all, 

Never posted here before, but I could use some words of encouragement. I am a 35 year old woman, diagnosed about six months ago via blood testing and endoscopy. Antibody levels were through the roof. Getting the diagnosis took almost 18 months and I was very, very unwell for all of them.

Immediately after the diagnosis I changed to a really strict gluten free diet, though my husband and kids do still eat some gluteny foods in my house. They are all helpful and supportive, and my kids do their very best to follow the new rules. I'm pretty sure I'm doing well with cross contamination (replaced most of the kitchen stuff, have my own toaster, everything is labeled, gluten is only prepared on one counter that my food never touches, etc.). I rarely eat out, honestly am kind of afraid too, and have mostly stuck with places that are totally gluten free. Mostly, I eat at home.

The first month of the diet was awful, with terrible withdrawal and little improvement. Removed dairy and finally started feeling better. For the first time in a long time I felt hopeful about getting healthy. Then at about the four month mark symptoms started creeping in again. This time there has been fewer GI issues, but over the last two months I have become incredibly exhausted, reflux seems to be back, red, dry eyes, throat and ear irritation, headaches, some sore joints, clumsy with my hands, horrible brain fog and my words get messed up sometimes (not too bad, only I notice it), and awful anxiety. I had all of these prediagnosis, but now am also getting tingling and spasms in my muscles. In the last two weeks or so morning nausea has come back too. I have lost about 30 lbs in the last two years, about ten in the last two months, and cannot afford to lose much more weight.

I do have an underactive thyroid, but have never been diagnosed Hashimoto's. Went to Dr. yesterday and they are doing a ton of blood tests and Friday I am having an MRI of my brain to compare to one (normal) I had about a year and a half ago because of some wierd visual changes that started when I got sick. The vision stuff has never resolved, but the neurologist wasn't concerned at the time. I've had my B vits tested recently and they were fine and all of my other vitamin levels were good or very, very slightly low at diagnosis (zinc and copper). Also had my celiac antibodies tested a couple weeks ago and they had gone down a lot. The blood tests being done currently include thyroid panel (still no antibody test) and an ANA (never done before) among others, and the MRI is to look for MS or anything else nasty, I assume.

So, the point of this long (sorry) story is that I am looking for any input from you smart people. And I'm really, really scared I have cancer or another autoimmune problem like Lupus or MS. I feel like I'm never going to get healthy and I'm getting quite depressed. None of this is helping the anxiety I've developed through the litany of medical tests I've had, the doctors who dismissed me as being a hypochondriac, fearing I'm going to not be around to take care of my little ones, etc. The MRI in particular is really scary for me and I hate having to be in that #$@& machine on top of it. I was so happy to be feeling better this summer and now... Not so much. I'm just having a hard time dealing. 

If anyone has any advice I would love to hear it. If not, at least I got to get it off my chest a bit, right...

Thanks in advance!

 

Most of your symptoms sound like all the ones I had with thyroid problems. I have Hashimotos. My thyroid is full of small nodules. Once on meds for awhile the tingling and numbness go away. Just be aware, with celiac most people tend to have a lot of food allergies. Soy is very high on the list. It is in everything. Goodluck. I will say it takes a good year to work out all the little issues. You will become very familiar with the startup of symptoms. 

[GlennJ]

On 10/3/2019 at 12:34 PM, Hollybee said:

Hi all, 

Never posted here before, but I could use some words of encouragement. I am a 35 year old woman, diagnosed about six months ago via blood testing and endoscopy. Antibody levels were through the roof. Getting the diagnosis took almost 18 months and I was very, very unwell for all of them.

Immediately after the diagnosis I changed to a really strict gluten free diet, though my husband and kids do still eat some gluteny foods in my house. They are all helpful and supportive, and my kids do their very best to follow the new rules. I'm pretty sure I'm doing well with cross contamination (replaced most of the kitchen stuff, have my own toaster, everything is labeled, gluten is only prepared on one counter that my food never touches, etc.). I rarely eat out, honestly am kind of afraid too, and have mostly stuck with places that are totally gluten free. Mostly, I eat at home.

The first month of the diet was awful, with terrible withdrawal and little improvement. Removed dairy and finally started feeling better. For the first time in a long time I felt hopeful about getting healthy. Then at about the four month mark symptoms started creeping in again. This time there has been fewer GI issues, but over the last two months I have become incredibly exhausted, reflux seems to be back, red, dry eyes, throat and ear irritation, headaches, some sore joints, clumsy with my hands, horrible brain fog and my words get messed up sometimes (not too bad, only I notice it), and awful anxiety. I had all of these prediagnosis, but now am also getting tingling and spasms in my muscles. In the last two weeks or so morning nausea has come back too. I have lost about 30 lbs in the last two years, about ten in the last two months, and cannot afford to lose much more weight.

I do have an underactive thyroid, but have never been diagnosed Hashimoto's. Went to Dr. yesterday and they are doing a ton of blood tests and Friday I am having an MRI of my brain to compare to one (normal) I had about a year and a half ago because of some wierd visual changes that started when I got sick. The vision stuff has never resolved, but the neurologist wasn't concerned at the time. I've had my B vits tested recently and they were fine and all of my other vitamin levels were good or very, very slightly low at diagnosis (zinc and copper). Also had my celiac antibodies tested a couple weeks ago and they had gone down a lot. The blood tests being done currently include thyroid panel (still no antibody test) and an ANA (never done before) among others, and the MRI is to look for MS or anything else nasty, I assume.

So, the point of this long (sorry) story is that I am looking for any input from you smart people. And I'm really, really scared I have cancer or another autoimmune problem like Lupus or MS. I feel like I'm never going to get healthy and I'm getting quite depressed. None of this is helping the anxiety I've developed through the litany of medical tests I've had, the doctors who dismissed me as being a hypochondriac, fearing I'm going to not be around to take care of my little ones, etc. The MRI in particular is really scary for me and I hate having to be in that #$@& machine on top of it. I was so happy to be feeling better this summer and now... Not so much. I'm just having a hard time dealing. 

If anyone has any advice I would love to hear it. If not, at least I got to get it off my chest a bit, right...

Thanks in advance!

Been there.  I’ve been going thru this for several years and thanks to Celiac.com they’ve confirmed what I had figured out... maybe you have the same problem.  It’s not just gluten.  My autoimmune system is screwed up by gluten sensitivity.  In addition to gluten I’ve acquired ridiculous intolerance to lots of everyday foods and my brain fog seemed to be caused by chemical additives and artificial sweeteners.  Here’s the list of things I avoid in addition to

cow’s milk

casein

casomorphin

chocolate

rye

barley

yeast

oats

coffee.

sesame

rice

corn

potato

hemp

buckwheat

sorghum

millet

amarath

quinoa

tapioca.

beef

eggs

fructose

soy

so basically I have organic salad, chicken, olive oil and vinegar, pecorino romano or buffalo mozzarella ( neither are from cows) for a meal and augment it with fresh washed fruit ( can’t have grapes). My joint pain, tight muscles, intestinal discomfort, extreme fatigue, skin issues all went away.  What helped me determine what was bad, was not only the symptoms after eating, but checking my weight everyday at the same time of day.  A 2lbs+ gain in one day was a sign of intolerance.  A weight loss of 1-2 lbs a day was a sign of food tolerance.  My last diet correction was cow’s milk and coffee. I now drink tea w/ sugar.   It took years to get to that but it’s worth it.  Feeling good is a miracle now.  Hope this helps.  

[cyclinglady]

13 hours ago, DebJ14 said:

You will probably get nowhere with the gastro regarding the other tests for food allergies and sensitivies and the epigenetic testing.  You will need to find a good functional medicine practitioner for that.

Many of my symptoms from the food intolerances were the same as before I went gluten-free.  I call it my tilt, but I could not walk a straight line.  I also had gut pain, numbness and tingling in my fingers, joint pain and my lovely rash returned.  

Sadly, since I was 54 when diagnosed, my tilt is still with me and I will die with it.  When going for a walk I have to have someone with me to walk along the curb.  Otherwise, I would tilt and fall over.  If I ever got stopped by a cop during a DUI crackdown, I would have big problems because I would fail the sobriety test, although I would pass the breathalyzer since I don't drink.

But, at least, even with all the food issues I have still not had a migraine headache in the 12 years since I went gluten-free.

Wow, your symptoms sound like gluten ataxia.  It is rare to find a doctor who recognized it.  You are so lucky.  ?

[Hollybee]

22 hours ago, KHB said:

I had immediate improvement on the gluten free diet. After four months, I started experiencing symptoms, mostly GI. I was very sick for over a year. I read an article about common food allergens  and discovered I was eating four common allergens for breakfast every morning. I stopped eating breakfast for a week and got better. My GI sent me to an immunologist to confirms allergies. Turns out that I was allergic to three of the breakfast foods and many more. All foods that I’d never had previous problems with. Most of the allergies went away within four years, and all were gone after 10. You might want to see an immunologist. Also, I have an under active thyroid.

I am going to ask about allergens next time I'm at the Dr. Hopefully that's all this is! Not that getting rid of more food is fun, but it would be more fun than feeling like I do right now, all the time! 

[Hollybee]

16 hours ago, DebJ14 said:

You will probably get nowhere with the gastro regarding the other tests for food allergies and sensitivies and the epigenetic testing.  You will need to find a good functional medicine practitioner for that.

Many of my symptoms from the food intolerances were the same as before I went gluten-free.  I call it my tilt, but I could not walk a straight line.  I also had gut pain, numbness and tingling in my fingers, joint pain and my lovely rash returned.  

Sadly, since I was 54 when diagnosed, my tilt is still with me and I will die with it.  When going for a walk I have to have someone with me to walk along the curb.  Otherwise, I would tilt and fall over.  If I ever got stopped by a cop during a DUI crackdown, I would have big problems because I would fail the sobriety test, although I would pass the breathalyzer since I don't drink.

But, at least, even with all the food issues I have still not had a migraine headache in the 12 years since I went gluten-free.

That's interesting. I'm definitely going to look into the food sensitivities possibilities. It sounds like they are a lot more common than I'd thought. 

[Hollybee]

5 hours ago, Connie Hess said:

Most of your symptoms sound like all the ones I had with thyroid problems. I have Hashimotos. My thyroid is full of small nodules. Once on meds for awhile the tingling and numbness go away. Just be aware, with celiac most people tend to have a lot of food allergies. Soy is very high on the list. It is in everything. Goodluck. I will say it takes a good year to work out all the little issues. You will become very familiar with the startup of symptoms. 

I thought it all seemed like thyroid issues too, but I don't have any nodules (had an ultrasound a couple months ago) and my tsh, t3 and t4 are all very normal. Dr is pretty skeptical at this point it's thyroid. I would be less worried if the symptoms were old, but getting new ones (especially neuro symptoms) if pretty unnerving. I'm hoping you all are right and I just need to find what my food intolerances are so I can fix it!

[goff]

On 10/7/2019 at 6:25 PM, DebJ14 said:

You will probably get nowhere with the gastro regarding the other tests for food allergies and sensitivies and the epigenetic testing.  You will need to find a good functional medicine practitioner for that.

Many of my symptoms from the food intolerances were the same as before I went gluten-free.  I call it my tilt, but I could not walk a straight line.  I also had gut pain, numbness and tingling in my fingers, joint pain and my lovely rash returned.  

Sadly, since I was 54 when diagnosed, my tilt is still with me and I will die with it.  When going for a walk I have to have someone with me to walk along the curb.  Otherwise, I would tilt and fall over.  If I ever got stopped by a cop during a DUI crackdown, I would have big problems because I would fail the sobriety test, although I would pass the breathalyzer since I don't drink.

But, at least, even with all the food issues I have still not had a migraine headache in the 12 years since I went gluten-free.

I to was diagnosed at 54 my story is the same better-not better. Your tilt does it have name? I had vertigo a PT who treats that cured mine-cured well it hasn't returned in 4 years. I have what I call left-sided weakness- the left lower half of my body just stops working. No name for this problem! Maybe PT could help your tilt. I to have a long list of things I don't eat ever. Histamines plays a huge role as far as what  I can eat and when, Good luck to all of you.

[DebJ14]

2 hours ago, goff said:

I to was diagnosed at 54 my story is the same better-not better. Your tilt does it have name? I had vertigo a PT who treats that cured mine-cured well it hasn't returned in 4 years. I have what I call left-sided weakness- the left lower half of my body just stops working. No name for this problem! Maybe PT could help your tilt. I to have a long list of things I don't eat ever. Histamines plays a huge role as far as what  I can eat and when, Good luck to all of you.

My tilt is a form of gluten ataxia.

[Svelte]

I just wanted to thank everyone for posting and responding to these kinds of posts.  I'm only about 8 weeks into being gluten free and I also get discouraged by the lack of progress.  My first 3 weeks were pretty bad, and then I seemed to get a bit better, but now I'm back again to pretty bad.  Reading through these posts helps keep me calm and gives me some insight into trying more changes to my diet to avoid other possible food allergies.

[DebJ14]

On 10/8/2019 at 8:04 AM, cyclinglady said:

Wow, your symptoms sound like gluten ataxia.  It is rare to find a doctor who recognized it.  You are so lucky.  ?

Exactly what I was diagnosed with!

 

[KnitterPup]

On 10/3/2019 at 12:34 PM, Hollybee said:

Hi all, 

Never posted here before, but I could use some words of encouragement. I am a 35 year old woman, diagnosed about six months ago via blood testing and endoscopy. Antibody levels were through the roof. Getting the diagnosis took almost 18 months and I was very, very unwell for all of them.

Immediately after the diagnosis I changed to a really strict gluten free diet, though my husband and kids do still eat some gluteny foods in my house. They are all helpful and supportive, and my kids do their very best to follow the new rules. I'm pretty sure I'm doing well with cross contamination (replaced most of the kitchen stuff, have my own toaster, everything is labeled, gluten is only prepared on one counter that my food never touches, etc.). I rarely eat out, honestly am kind of afraid too, and have mostly stuck with places that are totally gluten free. Mostly, I eat at home.

The first month of the diet was awful, with terrible withdrawal and little improvement. Removed dairy and finally started feeling better. For the first time in a long time I felt hopeful about getting healthy. Then at about the four month mark symptoms started creeping in again. This time there has been fewer GI issues, but over the last two months I have become incredibly exhausted, reflux seems to be back, red, dry eyes, throat and ear irritation, headaches, some sore joints, clumsy with my hands, horrible brain fog and my words get messed up sometimes (not too bad, only I notice it), and awful anxiety. I had all of these prediagnosis, but now am also getting tingling and spasms in my muscles. In the last two weeks or so morning nausea has come back too. I have lost about 30 lbs in the last two years, about ten in the last two months, and cannot afford to lose much more weight.

I do have an underactive thyroid, but have never been diagnosed Hashimoto's. Went to Dr. yesterday and they are doing a ton of blood tests and Friday I am having an MRI of my brain to compare to one (normal) I had about a year and a half ago because of some wierd visual changes that started when I got sick. The vision stuff has never resolved, but the neurologist wasn't concerned at the time. I've had my B vits tested recently and they were fine and all of my other vitamin levels were good or very, very slightly low at diagnosis (zinc and copper). Also had my celiac antibodies tested a couple weeks ago and they had gone down a lot. The blood tests being done currently include thyroid panel (still no antibody test) and an ANA (never done before) among others, and the MRI is to look for MS or anything else nasty, I assume.

So, the point of this long (sorry) story is that I am looking for any input from you smart people. And I'm really, really scared I have cancer or another autoimmune problem like Lupus or MS. I feel like I'm never going to get healthy and I'm getting quite depressed. None of this is helping the anxiety I've developed through the litany of medical tests I've had, the doctors who dismissed me as being a hypochondriac, fearing I'm going to not be around to take care of my little ones, etc. The MRI in particular is really scary for me and I hate having to be in that #$@& machine on top of it. I was so happy to be feeling better this summer and now... Not so much. I'm just having a hard time dealing. 

If anyone has any advice I would love to hear it. If not, at least I got to get it off my chest a bit, right...

Thanks in advance!

 

Your condition sounds just like mine... except it took years for my symptoms to come back. I was totally gluten free, too.

In my case, my immune system became sensitive to other proteins in other foods - it reacts as if I’m eating gluten. These proteins share molecular similarities (it’s called molecular mimicry) - some are very close to being the same molecule - with slight variations. 

These food items include the following: milk, yeast, corn, rice, millet, oats. I have stopped consuming all grass seeds (which is what grain is). I’ve removed cane sugar (cane is a grass) - I can not digest cane sugar - the sugar goes in to the gut unprocessed, the bacteria eat the sugar, create gas, and the gas pressure causes anything in the bowels to be forced out making it look like I have diarrhea. My skin starts itching violently, too after eating sugar. I have switched to honey with no problems. I no longer have issues with the bowels.

The ataxia you describe - I had that, too. It was severe. I felt like I was a tuning fork - like I was constantly vibrating. That was caused by eating all of the foods of which  I’m intolerant. Mine was so bad, I couldn’t speak. 

What I am doing is following the AIP Diet (Auto Immune Protocol) - I started this after being gluten free for 25 years. I can tell you I feel the best I’ve ever felt - and I’m 65 years old.

I would suggest you read Sarah Ballantyne, PhD‘s website called “https://www.thepaleomom.com/“. She has the same issues and she has done extensive research on the subject and has published a number of very helpful books. I am following the protocol and feel wonderful. There are other foods you may need to avoid (like nightshades, because of leaky gut), so please read her website.

I wish you well!

[Hollybee]

Thanks for everyone posting. It really helps to have some input from people who have gone through something similar. All my blood work came back totally normal and I haven't heard from the neurologist in the last two weeks (they do have the results, I checked cause I'm getting kind of neurotic on the medical front, but they only call with bad news), so in theory nothing dire was found there. 

I also started keeping a food journal, which sounded like a huge nuisance but is actually not (for anyone reluctant out there, like I was). Hopefully that can help pinpoint some things. Currently cutting out nightshades too, because I felt really gross after eating potatoes and gluten-free pasta w/ red sauce (homemade) a few times. We'll see. I'll do about anything at this point to feel better, so thank you all for the suggestions and support. It really helps!

[NNowak]

I’m really sorry you are struggling. Through my past 25 years, since being diagnosed with Celiac, I’ve experienced a few downfalls in my health directly related to a stressful event - illness or life stress. It will take 18-24 months to heal the mucosal lining so you can hope to absorb the nutrients from your gluten-free food. Bone broth and collagen shakes will help with this. Kombucha will help restore the good bacteria in your guts. Look into incorporating a low FODMAP diet until you feel better.  Your wellness will fluctuate and you need to know how to heal yourself - Western medicine doesn’t provide our physicians with the ability to think outside the box. Thus, our varying symptoms and companion autoimmune diseases leave us diagnosed as anorexic, hysterical or depressed rather than taking the time to investigate our ailments further. Functional medicine may be of more help to you as it seems you are experiencing symptoms of long term vitamin deficiency rather than more celiac symptoms. A B12 level without folate, MMA and homocysteine is not accurate, which most primary care docs won’t mess with. A calcium level without Vitamin D doesn’t show the whole picture. Functional medicine often isn’t covered by insurance, which means the physicians don’t follow their guidelines and restrictions. Western medicine restricts our docs to their specialty and pigeonholes patients to those diagnoses they cover. 
 

Spend the time researching Celiac and know your family history. Take notes and have intelligent conversation with your practitioner in the partnership of your health. It took over 2 years for me to recover when I was diagnosed 25 years ago. I highly recommend you take  supplements to make sure you’re getting all the Bs, D and Calcium. Bone broth, collagen and kombucha are natural and will promote healing. Rest and feel better soon. 

Edited October 18, 2019 by NNowak

[Wheatwacked]

Choline, Iodine, K, Lithium, DHEA, Lutein, Magnesium, Potassium, Zinc, and Preformed Vitamin A may also be deficient by nature of your disease. These and any other nutrient deficiencies may cause, but will certainly exasperate, other symptoms. Most of them cannot really be measured, and are therefore ignored. Folic Acid may be related to endometriosis and prostate cancer. My prostate has shrunken since going GFD. I don't know if it was the Folic Acid added to wheat flour or just the wheat. The industry considers folate and folic acid equals.

Anorexia was reported in patients taking 15 mg folic acid daily for 1 month. Decreased vitamin B12 serum levels was reported with prolonged folic acid therapy.

The 100% DRV listed on the packaging label is the minimum required, not the amount that is good healing your nutrient starved body.

[cyclinglady]

On 10/17/2019 at 10:07 AM, Hollybee said:

Thanks for everyone posting. It really helps to have some input from people who have gone through something similar. All my blood work came back totally normal and I haven't heard from the neurologist in the last two weeks (they do have the results, I checked cause I'm getting kind of neurotic on the medical front, but they only call with bad news), so in theory nothing dire was found there. 

I also started keeping a food journal, which sounded like a huge nuisance but is actually not (for anyone reluctant out there, like I was). Hopefully that can help pinpoint some things. Currently cutting out nightshades too, because I felt really gross after eating potatoes and gluten-free pasta w/ red sauce (homemade) a few times. We'll see. I'll do about anything at this point to feel better, so thank you all for the suggestions and support. It really helps!

If the neurologist does not find anything, please consider being extremely strict on the gluten free diet until you see improvement.   Just whole, single ingredient, foods.  Consider even an Autoimmune Paleo diet which is grain free (and does not include foods like nightshades).  

Research is your best defense.  I am glad you are keeping a food journal.   ?

Edited October 20, 2019 by cyclinglady