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Gluten Free 5 Weeks Some Symptoms Getting Worse
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My biopsy was on the Jan 3rd and I went gluten free that afternoon. The results came back positive on Jan 7th. I am super strick "psycho" gluten free. All food, cookware, utinsels, spatulas, bakeware, strainers, cutting boards, spices, medications, beverages, appliances, tupperware, personal hygine items, etc products have been replaced or verified gluten free through the manufacturer and I have cooked all three meals every day since Jan 3rd for myself with the exception of one which I didn't get glutened by. The problem is my unintentional weight loss which was the biggest cause for my screening and diagnosis got worse within 10 days I had lost 7 pounds I finally stopped losing after about 2-2.5 weeks with a total loss of 8 pounds (from a already small 114 on biopsy day to a 106 at my lowest) and I have not put anything on and kept it. My D before Gluten-Free was sporatically bad now it's several times a day nearly every day and my abdominal pain which came only once a month or so at the severe level was constant for 2 weeks post Gluten-Free diet and now is occurring a few times a week. It's so severe I cry and occasionally spike a low grade fever around 101 or so. I have horrible gas and gas pains with a lot of distention. Every time I am able to get up to about 109lbs (since the initial Gluten-Free weight loss stopped I hover around 106-107 on a daily basis) the diarrhea hits full force and the stomach pain gets to the tear inducing level. I've been seriously thirsty drinking about 2000mL+ a day of water and still getting dry mouth and dehydration headaches while urinating completely clear. I have a strange rash on my ankles that is not DH it looks like mild vasculitis but honestly I have no clue what it is. I take probiotics via kombucha and coconut yogurt, I'm 100% dairy free in addition to gluten free and I eat a naked gluten free diet (i.e. I don't eat processed food often). My GI has me scheduled for a colonoscopy in 2 weeks and I'm so nervous there is something scary going on like Crohns, colitis or worse. I do have pernicious anemia, the autoimmune type where my body creates intrinsic factor anti bodies so I cannot absorb b12 even after I heal from celiac damage, but it's compelety under control via b12 shots. I'm just at a loss while I have more energy from the Gluten-Free diet, my acne is sort of clearing up, and my lightheadedness is subsiding some things are getting worse its pretty frustrating. Has anyone dealt with this and what, if anything additional, was going on?

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So sorry you are going through this. Has your doctor done stool testing to rule out any food borne illness. I ask because your symptoms are very much like when I had salmonella. I was prediagnosis and suffered as you are suffering for two weeks (with the doctor insisting my IBS was just acting up) before the doctor finally did stool testing and found it. May not be the case for you but it would be good to rule it out before you go through a colonoscopy prep. Your doctor can have you pick up a kit for testing and call a script into the lab. Call the office and ask to speak to a nurse and you should be able to do it without having to wait for an appointment.

Also be sure to try and avoid dairy and soy for a bit if you aren't already. Dairy especially can be a problem for us until we heal.

Hope you're feeling better soon.

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yeah, salmonella, would be a thought, especially if you are doing more raw veggies...

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Salmonella may make sense I forgot to mention I'm having blood IN my stool not the water around it too. But the whole family eats the same thing everyday and no one else is having these problems. My son has non- celiac gluten sensitivity (he tested negative on all 5 celiac panel tests but responded to the diet) and when we took him gluten free his diarrhea went away when he got glutened on monday he had it back but no blood. I can't recall eating anything that the family hasn't eaten. Are we more susceptible to salmonella than other healthy gi tract people?

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are you eating dairy?  because, if your villi are damaged, you will have trouble digesting dairy until you start healing.  automatic D.  the tips of the villi is where the enzyme to digest dairy is produced, so if they are all flat and stuff, they don't produce it. 

 

if you aren't taking a probiotic, start taking them.  i am still taking them 2x per day. 

 

i was 97 lbs when i got dx'd and 3 1/2 years later i am finally up to 118. 

 

good luck and i hope you feel better :)

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I haven't eaten any dairy in 2.5 years, I call it an allergy but I'm not sure what it is I break out in cystic acne get migrains and canker sores any time I get dairy in my food, I'm drinking a kombucha everyday and eating a serving of so delicious coconut yogurt both of which have live probiotics and were recommended by my dietician who specializes in celiac, crohns, and ibd. I guess I will just have to manage and wait for the colonoscopy and see if the doctor will check for salmanella in the next two weeks.

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I had blood in my stool with salmonella also. That was one of the things that clued me in, that and the weird rash on my ankles and fever,that I was dealing with more than just my 'IBS'.

Do get the stool testing done. Don't wait to see the GI your regular doctor can order the tests. If it is salmonella or another food borne illness to wait could be dangerous. Not saying for sure it is but you need to rule it out especially with the blood your seeing.

It wouldn't be unheard of for only one person in a family to get a food borne illness. Particularly if they are the one preparing the food.

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Diabetes popped into my mind when I read a few of your symptoms, Addison's can cause a crazy thirst as well. Have you had your adrenal and pancreas health checked lately?

 

I hope you feel better soon.

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Hi , you say it occurs a few times a week , I think notme! may have something and that a food or drink may the culprit , something that you are having few times a week , just a thought ....

coconut can have a laxative effect on some people ,

I don't know much about Kombucha except that it's very beneficial for good bacteria,

although I did read you have to watch it doesn't get any mold in it ,

We are all different and some things just don't suit everyone especially with our sensitive tums

I do hope you pin point something and feel better soon

Jiggles x

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I felt good for 4 days when I first went gluten free, and then suffered a long while worse than ever.  It didn't hang on though.  I got smarter at avoiding contamination.  I found other foods that caused me problems.  I kept healing.  My hardest days were often followed by my best new highs.  When the going gets tough, keep trudging.  You might not have arrived yet, but you are going in the right direction.

 

D

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Your reactions do sound like the same reaction I get when I eat either oats or dairy.  Hmmm!  Hope you feel better soon.

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Thank you all for the suggestions. I think I need to schedule an appointment with my regular physician. Type 1 diabetes runs in my family and for 6-7 years I've had intense salt cravings which have always made me wonder if I had addison's I eat rock or margarita salt out of my hand frequently sometimes several times a day but thankfully my blood sodium level is always at the bottom of normal. I also do eat a lot more veggies and I am the one cooking them. I ate a lot before the diet now I'm eating a ton and I especially love spinach which seems to be the veggie most recalled for salmonella so checking for salmonella is probably a very smart idea. I don't think it could be diet related because I've been eating a lot of the same ingredients but it's not impossible. I already am 100% dairy free and obviously gluten free, I have a severe pineapple allergy so I'm pineapple and citrus fruit free, we don't eat fish in the house because of my daughters seafood allergy so I know it's very possible that it could be food related I just wouldn't know where to start looking. I don't eat much soy because I cook from scratch and coconut doesn't bother me I know carragean is not good for us and other than the yogurt I eat for breakfast pretty much every day it isn't in any of my food. I haven't had any oats except for in some sample gluten free bars that I tried but there were only 3 and they're long gone. I cut back on onions and bell peppers but haven't eliminated them entirely but they cause gas not much else. I think the blood is indicating something medically is going on rather than reactionary but maybe I'm wrong. Thank you for the suggestions though it really helps me look back at my eating and habits and really try to connect the dots.

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Thank you all for the suggestions. I think I need to schedule an appointment with my regular physician. Type 1 diabetes runs in my family and for 6-7 years I've had intense salt cravings which have always made me wonder if I had addison's I eat rock or margarita salt out of my hand frequently sometimes several times a day but thankfully my blood sodium level is always at the bottom of normal. I also do eat a lot more veggies and I am the one cooking them. I ate a lot before the diet now I'm eating a ton and I especially love spinach which seems to be the veggie most recalled for salmonella so checking for salmonella is probably a very smart idea. I don't think it could be diet related because I've been eating a lot of the same ingredients but it's not impossible. I already am 100% dairy free and obviously gluten free, I have a severe pineapple allergy so I'm pineapple and citrus fruit free, we don't eat fish in the house because of my daughters seafood allergy so I know it's very possible that it could be food related I just wouldn't know where to start looking. I don't eat much soy because I cook from scratch and coconut doesn't bother me I know carragean is not good for us and other than the yogurt I eat for breakfast pretty much every day it isn't in any of my food. I haven't had any oats except for in some sample gluten free bars that I tried but there were only 3 and they're long gone. I cut back on onions and bell peppers but haven't eliminated them entirely but they cause gas not much else. I think the blood is indicating something medically is going on rather than reactionary but maybe I'm wrong. Thank you for the suggestions though it really helps me look back at my eating and habits and really try to connect the dots.

Are you anemic? Salt cravings seem to be linked to that. And celiac can cause anemia. I would think you should go gluten-free for a few months. Give yourself some time to heal.

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You say your 100% dairy free but then say you are eating yogurt every morning. Did you mean you are lactose free not dairy free? Some of us will react to the protein in dairy products rather than the lactose. You may want to drop the yogurt for a bit to see if that helps if the doctor can not find a reason for your suffering.

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I'm not currently anemic but I'm close. And the yogurt is 100% dairy free is called So Delicious cultured coconut milk. It's dairy, soy, and gluten free and organic. It's great I absolutely love it! Same company makes a line of ice cream and all but one flavor is gluten free but I think they were changing that. I have been actually feeling better for 2 days and my weight has stayed at 108-109 and my bathroom trips are urgent but they are less frequent only twice yesterday and I can't see any blood now. Maybe I'm just a slow healer...

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I should say I've been feeling good yesterday and this morning but waking up feeling good Is a new and much welcomed gluten free side effect!

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I should say I've been feeling good yesterday and this morning but waking up feeling good Is a new and much welcomed gluten free side effect!

awesome!  :)  in the beginning, there were good days and bad days, but as things started to heal up, there were more good days than bad days.  i was surprised when the headache i didn't even know i had suddenly disappeared.  yes, the waking up in the morning, lolz, instead of dragging around for hours!!  glad you are feeling better. 

 

i remember i kept a food journal in the beginning, for the 'bad' days.  encouraging to go back and see i had more 'good' days if i could just make it through the 'bad' one, a 'good' one was right around the corner..........  :)

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You said you had blood in your stool? Please don't forget to mention this to your GI when you meet him next!! I have ulcerative colitis as well as celiac and this is one of the first signs of a flare up- you really have to watch what you eat to minimise your D , because if it develops further the D will get so bad that you will not be able to hold anything in!! I also love having yoghourt fro breakfast, but I have had to stop doing this because i have discovered since going gluten free that this also gives me D-

Also are you stressed? My UC tends to flare up in there situations too.

According to some studies there is a high incidence of ulcerative colitis sufferers who are also celiac.

Good luck and love, my thoughts are with you

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I have very similar issues.. constant burring abd pain and my stomach would feel like it was swelling up at certain points and if i touched it.. it would feel like I was stabbing my stomach with a 1000 degree rod. I too was very strict with my diet and just had a repeat colonoscopy/endoscopy and it was pretty much normal. The Celiac Disease was non-evident ensuing it had healed from 6 months of the diet, but I still have this abd pain. I will be seeing the GI tomorrow to discuss further. I wish you luck. If you wanna look at my first edg report I posted it here earlier today and compare it to yours…http://www.celiac.com/gluten-free/topic/106494-why-do-i-have-sharp-stabbinggnawing-abdominal-pain/

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I felt good for 4 days when I first went gluten free, and then suffered a long while worse than ever.  It didn't hang on though.  I got smarter at avoiding contamination.  I found other foods that caused me problems.  I kept healing.  My hardest days were often followed by my best new highs.  When the going gets tough, keep trudging.  You might not have arrived yet, but you are going in the right direction.

 

D

 

This was also the case for me.  I have problems with some processed gluten-free foods.  I had to keep a food/symptom journal and keep careful track of what I ate to determine which foods were safe for me.  Many of us need to avoid soy.  That could be your problem.  You could try to eliminate the yogurt for a week and then add it again to see what happens.  I'm glad that you are now showing some improvements.  I hope that continues.

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I have very similar issues.. constant burring abd pain and my stomach would feel like it was swelling up at certain points and if i touched it.. it would feel like I was stabbing my stomach with a 1000 degree rod. I too was very strict with my diet and just had a repeat colonoscopy/endoscopy and it was pretty much normal. The Celiac Disease was non-evident ensuing it had healed from 6 months of the diet, but I still have this abd pain. I will be seeing the GI tomorrow to discuss further. I wish you luck. If you wanna look at my first edg report I posted it here earlier today and compare it to yours…http://www.celiac.com/gluten-free/topic/106494-why-do-i-have-sharp-stabbinggnawing-abdominal-pain/

I did not have as many biopsies as you I had four. They all read the same Moderate vilious blunting and increase intraepithelial lympocytes. What the physician did note on visual inspection is that I have erosions but due to the wording I couldn't tell if it was in the stomach, duodenum or the small intestine itself. I also tested negative for H Pylori.

 

Soy does not bother me I don't eat processed food and don't add soy to my food and when I do eat the random recipe with soy it makes no difference. Dairy is a big problem for me I don't eat it at all. My yogurt doesn't seem to be the problem either I've been 4ish days with no Cultured Coconut Milk (i.e. my yogurt) it has no soy in it either but not eating it does not seem to change anything either but I'm waiting longer because I did get glutened by mishandled ground beef at meijer. It either was really badly cross contaminated or illegally added filler and it was a bad one I lost the ability to walk for an evening and was effected for way more than 48 hours which was how long the other two glutenings lasted AWESOME! So I'm kind of restarting watching my reactions prior to the meijer incident I had not been glutened in like 3-3.5 weeks. My doctor knows about the blood he is looking for UC Microscopic colitis, chron's etc on my colonoscopy which is now moved to next week. It's not salmonella so that's nice. My horrible smelling gas is back but my guess is that it's from the beef glutening. I'm not going to be surprised if they find colitis or chron's at this point to be honest. It is what it is and I'll deal with it if that's the case. I will get through this and feel better soon!

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I'm now at 9 weeks post diagnosis and on the gluten-free diet I am certain the gluten is all gone from our house and I don't eat processed foods or eat out but I'm now up to diarrhea 5-6 times a day (no matter what I eat or if I even eat), no weight gain still losing very small amounts of weight, bad fatigue, and stomach aches and pains all the time. My colonoscopy came back normal (7 biopsies and a polyp all removed and tested) and my GI is now ordering a CT scan to screen for lymphoma another thyroid check and if those come back  going through the process to re-scope and determine if it's refractory sprue... This seems like a nightmare. I also made an appointment with my general MD and am asking her to check for addison's, diabetes, pancreas issues, anything else that causes weight loss and diarrhea. I truly feel like I'm living a nightmare. I guess there is nothing I'm asking here I just am so frustrated and sick of this that I figured if anyone understood it would be the people here.

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I'm now at 9 weeks post diagnosis and on the gluten-free diet I am certain the gluten is all gone from our house and I don't eat processed foods or eat out but I'm now up to diarrhea 5-6 times a day (no matter what I eat or if I even eat), no weight gain still losing very small amounts of weight, bad fatigue, and stomach aches and pains all the time. My colonoscopy came back normal (7 biopsies and a polyp all removed and tested) and my GI is now ordering a CT scan to screen for lymphoma another thyroid check and if those come back  going through the process to re-scope and determine if it's refractory sprue... This seems like a nightmare. I also made an appointment with my general MD and am asking her to check for addison's, diabetes, pancreas issues, anything else that causes weight loss and diarrhea. I truly feel like I'm living a nightmare. I guess there is nothing I'm asking here I just am so frustrated and sick of this that I figured if anyone understood it would be the people here.

 

Sorry you are still feeling poorly -- it takes many of us much more than two months to heal.  It is possible to feel even worse and have symptoms change and then one day realize you are improving.  Some times that happens within days, sometimes months and unfortunately for some of us - years.

 

I do hope you improve quickly and it is important for you to investigate any other possible causes of your symptoms -- just a note in case your doctor has already suggested this path -- it is way too early to have a repeat endoscopy with Refractory Celiac Disease in mind.

 

I didn't read your entire thread...my apologies if you have already heard/done this -- it is best for the healing digestive system if you eat primarily whole foods -- limiting all processed foods, even those that are labeled gluten-free should be used sparingly as treats rather than staples.

 

Hope you find some answers and are feeling much better very soon :)

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Hello motheroftwins ,

I am so sorry to see your still having a rough time of it , it did take me over a year to stop losing weight ,

my gastroenterologist and dietician were baffled ,

It was so frustrating ,

and it's only recently that I managed to put a tiny bit on

Can the dietician find you any suitable drink supplements to help you at this time ?

they managed to find me some without milk in which helped a lot ,

I didn't feel well for a very long time after going gluten free , there were a lot of down days ,

the only thing that helped me feel better was a very strict whole foods diet ,

my meals were mainly sweet potatos steamed fish or meat and veggies , fruit hurt too much with trapped gas ect ,

my dietician told me to take a multi vitamin , but I didn't take anything, as I was too scared , even a pice of raw apple hurt so much ,

someone suggested I stewed them which did help a little

but so many foods seemed to hurt my damaged gut ,

eggs milk dairy coconut soya and corn were out too

as they gave me the big D ,

Also rice or any manufactured cakes and bread made me feel sick and dizzy at first ,

I also found that I got awful nausea and dry heaving when I travelled in the car ,

I actually thought the car sickness was gluten contamination , " as it only ever happened after going gluten free! " so weird ,

but .... I finally worked out that in those early days the car sickness was magnified to such an extent it was quite debilitating ,

I also had problems with ground meat ,

so I bought one of those hand held meat grinders to grind my own meats ,

and at last over a year later I have only just put on two pounds, of which one pound comes and goes ,

It has all been a very slow process , but I am glad to say that I have now gained back a few foods,

my latest was eggs, so I am hoping to gain back a few more in time

and I am glad to say that the car sickness has stopped being magnified , although I do take travel pills for long journeys now ,

I guess what I am saying is nine weeks is still very early , and healing may depend on how damaged our guts are to begin with ,

and didn't you say that your four biopsies all had damage ?

Perhaps you could write down for us in detail what you eat and what supplements you take ?

as you never know others with more experience may spot something lurking in there for you ,

I know it takes quite a long time for us to heal fully

and it only takes a small unforeseen hiccup to put me back for a week or two,

More recently would you believe it .... I think it was a large boiling ham ,

I may be wrong .. but I can only think it was the stabilizers in it that made me sick,

as I am okay with bacon and other hams without stabilizers ,

Also there are some things I cannot tolerate after going gluten free that I had no issues with before ,

it's crazy ,

for instance someone on here was sick due to contaminated building dust from the walls , crazy crazy disease,

I do hope you get to the bottom of all this and start to get better real soon ,

big hugs x x jiggles

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Thank you I know it takes a long time to heal but I'm actually getting worse when I was diagnosed I did not have daily diarrhea nor did I have stomach aches and pains  now I'm up to 5-6 times a day and regular stomach pains. In addition to losing 7lbs in the first 10 days of going gluten free and not gaining it back. So rather than just feeling bad I'm worsening and it feels like it's happening quickly. I don't take supplements I was told to take them but I'm too scared they will have gluten and right now I can't add to my issues. I stopped eating coconut yogurt and it hasn't made a difference and I stopped the kombucha per doctor's request resulting in nothing. Every single food causes problems. There has not been one "safe" food that I can find. I just got engaged about 3 weeks ago and my ring fit that night now it's too big so even my fingers are losing weight. I was much better off pre-gluten-free diet but there is no way to go back now even a peck on the lips from someone drinking a beer 30 min earlier results in a glutening and I can't take the pain that that causes on top of worsening symptoms.

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