Looking For Answers

[Canadianmom1997]

Hi everyone, I am new to this group. What a wonderful site.

I have not been diagnosed with celiac disease or gluten intolerance for that matter but the symptoms I have had and continue to have seem to fit. I have had 3 colonoscapy's in my mid to late twenties. Nothing showed up and they called it irritable bowel.

I am now 39 and the problems seem to be getting worse not better. I have gained a lot of weight in the past 2 years. That is not because of how I am eating. I have had a full hysterectomy becuase of severe endometreosis, constant vaginal yeast infections and I have terrible oral health. I have spent thousands of dollars on my teeth but they are getting worse not better. I have terrible diareah, headaches, bloating (especially if I have something with flour or carbs in it) and gas, gas and more gas. It seems if I go a day or two without carbs the symptoms ease up. As soon as I eat anything with gluten in it I pay the price. Perhaps this is coincidental but I really believe it is not. I am constantly irritable, can never be rested enough though have problems sleeping and the pains I get in my abdomen are out of this world. I can eat and it will be right through me in a matter of a half hour or less. Sometimes it can take me 3 days to pass something. My system is very irregular and I am suffering daily. I have always had a compromised immune system and fall ill very easily. I received my flu shot and still have had the flu 3 times since early October. I don't seem to respond to antibiotics and I always end up with surgical infection afterwards. I don't think my body absorbs antibiotics. I get strep throat a good 5 or 6 times per year. One would think that will all the health problems I have had I would be 98 pounds but that is not the case.

Despite being on less than a 1000 calories a day for the past 3 months I have only lost 4 pounds. My stomach gets so bloated that I look like I am pregnant. I am over weight but not obese. I am extremely discouraged and I am losing hope these days. My doctor tells me it is stress.

I have a special needs autistic spectrum 8 yr old daughter. I am starting to wonder if she does not have this as well. Her behaviours are right off the chart when she eats sugar or high carbs. My mother, who is now in terrlbe health has had many of the same symptoms I have. She is now diagnosed with diabetes, peripheral neuropathy, irregular heart beat and host of other serious and debilitating illness.

I am wondering if anyone has suggestions for me and the questions I should be asking my health care provider. I would like to get to the bottom of this so I can have some sort of quality of life. Right now it changes from hour to hour. I made the mistake of having some cereal for breakfast yesterday. I have been extremely ill ever since. I have just about all I can take without some sort of guidance and help.

Any suggestions you have for me would be very much appreciated. Are my flair ups coincidental or is there something more to it then that.

Thanks for your help!

Tammy Robinson

[Carriefaith]

Welcome

I am constantly irritable, can never be rested enough though have problems sleeping and the pains I get in my abdomen are out of this world. I can eat and it will be right through me in a matter of a half hour or less. Sometimes it can take me 3 days to pass something. My system is very irregular and I am suffering daily.

Your symptoms sound very typical of celiac disease. Some of your symptoms are similar to mine. When I eat gluten, I can get extreme fatigue, brain fog, mild-severe stomach pain, mild insomnia, irritability, anxiety, heart paliptations, chicken pox like spots on my skin, and various GI problems (eg. bloating, gas, diarrhea)

I am wondering if anyone has suggestions for me and the questions I should be asking my health care provider. I would like to get to the bottom of this so I can have some sort of quality of life. Right now it changes from hour to hour. I made the mistake of having some cereal for breakfast yesterday. I have been extremely ill ever since. I have just about all I can take without some sort of guidance and help.

My advice would be to ask your doctor to get tested for celiac disease. Here is the celiac blood test panel:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

Also, don't start a gluten free diet until after testing, since you may get false negative results.

I have a special needs autistic spectrum 8 yr old daughter. I am starting to wonder if she does not have this as well. Her behaviours are right off the chart when she eats sugar or high carbs.

I have read that people with autism do quite well on a gluten free and casein free diet. This is something that you may want to research or ask your doctor about.

Let us know how everything goes, and if you need help, just let us know.

[jerseyangel]

Hi Tammy and welcome --I agree with everything Carrie said--I would tell my Dr. I wanted to be tested. Did you notice that your symptoms got worse or changed after your hysterectomy? Sometimes surgery can trigger Celiac, if you're pre-disposed. Your issues sound very gluten related to me. I would write everything down before you see the Dr. so you don't forget any symptom or any questions you have. I would also jot down the tests Carrie listed in case the Dr. is not familiar (my mom's wasn't).

[Jnkmnky]

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Peptides released into the bloodstream through a "leaky gut" cause an opiate affect on the brain. Some Celiacs experience this and call it "brain fog". People with autism seem very susceptable to the leaky gut/peptide reaction to gluten and casein. Kinnkinnick has great.... really great food, and most of it is glutenfree/caseinfree. Look for the gluten-free/cf label on the products you're interested in. Verbal skills are reportedly the biggest improvement in an autistic child that responds to a Gluten-free Casein-free diet. There is a wide range of benefits, some minor, some major. Try it and see what happens. There are no health risks going gluten/casein free. Eat more salad for the lost calcium. You need less calcium per day if your calcium source is NOT dairy!!!! The protien in dairy actually blocks a large portion of calcium from being absorbed That's why the U.S. recommended daily dose of calcium is so high= our primary source is dairy!! Shocking, I know So don't fret about the diet! That was my point.

all of my endo symptoms went away when I went gluten-free. I do not have celiac disease according to the testing I had done at Prometheus Labs... which is very reputable. I ate gluten, my endo symptoms returned. I stopped eating gluten, they went away 100%, again.

[tarnalberry]

If you haven't had the full bloodwork done, I would suggest that you do that right away. I would follow that by starting the gluten-free diet once the blood draw is done, unless you plan to follow with another endoscopy. (Did your previous endoscopies include biopsies? If not, they were worth nothing in diagnosis celiac disease.)

If you don't want to go through testing, at this point, just try the diet. Try it for at least four weeks. Then, if you're still not sure if it's made a difference, eat something with gluten, and see how you feel. This dietary test IS a real test, and is often listed as also being crucial to a final diagnosis, though many doctors ignore it.

In the end, you have to listen to your body over general tests.

[Dee-B]

all of my endo symptoms went away when I went gluten-free. I do not have celiac disease according to the testing I had done at Prometheus Labs... which is very reputable. I ate gluten, my endo symptoms returned. I stopped eating gluten, they went away 100%, again.

Hi - Can you email me off board with details or endo symptoms that clreared up when you went gluten free and time line for symptoms

dee_barlow@hotmail.com

Thanks