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Gluten Free 5 Weeks Some Symptoms Getting Worse


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#1 motheroftwins2010

 
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Posted 11 February 2014 - 09:40 PM

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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#2 ravenwoodglass

 
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Posted 12 February 2014 - 03:38 AM

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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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#3 frieze

 
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Posted 12 February 2014 - 06:34 AM

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


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#4 motheroftwins2010

 
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Posted 12 February 2014 - 08:45 AM

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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#5 notme!

 
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Posted 12 February 2014 - 11:46 AM

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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celiac confirmed by endoscopy 9/2010

 

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#6 motheroftwins2010

 
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Posted 12 February 2014 - 12:16 PM

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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#7 ravenwoodglass

 
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Posted 12 February 2014 - 02:19 PM

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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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#8 nvsmom

 
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Posted 12 February 2014 - 04:25 PM

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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#9 jiggles

 
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Posted 13 February 2014 - 05:51 AM

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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#10 1desperateladysaved

 
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Posted 13 February 2014 - 01:27 PM

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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#11 tka

 
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Posted 13 February 2014 - 08:08 PM

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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#12 motheroftwins2010

 
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Posted 13 February 2014 - 08:27 PM

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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#13 kareng

 
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Posted 13 February 2014 - 08:46 PM

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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#14 ravenwoodglass

 
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Posted 14 February 2014 - 04:27 AM

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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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#15 motheroftwins2010

 
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Posted 14 February 2014 - 05:24 AM

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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