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What Is Happening To Me?


HappyMommy

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HappyMommy Newbie

First time on this site, very informative, so glad to be able to reach out like this...

Here goes,

I have had stomoch issues on and off for about 10 years, never really thought to much about it until I had my son 4 years ago. That is when I started feeling really bad. Started out having what I was told were gall bladder problems. I had every test under the sun and they all came back "looks good, not problems". So then the pain in my joints started. It was then thought I had arthritis, not the case, tests were normal. The pain is still there to this day. Sometimes it is worse than others but still there non the less. I have some mornings when it takes me a few minutes to get out of bed because I hurt and am stiff all over. Mostly hits me in my back, knees and ankles. When I get really flarred up, my fingers hurt to move. So, next comes my stomach bloating and burning feeling under my ribs. I never know when it is going to happen, seems mostly at night. I will be awakened sometimes with a stomach ache. My sides will feel like I am being pinched inside, stabbed even. It seems mostly on my right side. I sometimes feel like a baloon is blowing up. I have been told I had kidney stones also, but I didn't. Sometimes my tummy looks like I am pregnant. Now I am a large girl anyway so most of the time my doctor says to lose weight and exercise. I am all for that but when I try to work out, I feel worse. My body just aches all over. I can make it through my days and get done what I have to but I am so tired and worn out all the time. I am not the person I was 4 years ago. I have been so anxious and then depressed at the same time wondering what is happening to me? Is this how it is going to be? I don't remember what it is like to "feel good".

I have since had another child, what I find interesting about that is I have read that people with Celiac can have issues with their babies. My daughter was born full term at 4 pounds 13 ounces. All kinds of tests were done and no one seemed to have any explanation. She is fine, thank God! I guess if I am not absorbing what I should be, neither was my daughter.

I have found out that my Grandmother was a Celiac. I didn't know that until just a few weeks ago. That is when I started to research on this disease. I had no idea what it was. I read some message boards and it is like I am reading about myself. I can't think straight half the time, I used to be so quick whitted, that is gone. I feel like I have gum in my brain, it just seems so slow. My work is starting to suffer as well.

I just had the blood test done after telling my dr about this. She seemed reluctant to hear me about all this. She said she thinks I have IBS and Post Partum Depression.... I just think there is something more to what is happening with me. I am so afraid to hear her say they found nothing.

I am starting to feel like maybe everyone is right, I am fat and lazy and need to get off my butt.

I have decided that if the blood tests show nothing, I will just put myself on the diet and see what happens....

Has anyone else had this happen? Could there be something more than IBS here? Am I just nuts like it seems everyone thinks?


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mama2 Apprentice

Welcome! You will find great suport here!

I too HAD a lot of unexplained symtoms ... unexplained prego problems left unanswered. since going gluten-free this summer I am feeling much better no more GI problems my aches have too gone away... I also have a family history of it. I had inconclusize biobsey results (could not rule in or out celiac). I finally just went on the diet ... went in to see my doctor for stange skin rash and he gave me some stuff to help with the itch and said it would not hurt to gluten-free and sent me on my way. within 3 days I started to notice a difference ... GI symtoms stoped. I figured trying a gluten-free diet could'nt hurt. Glad I did.

tom Contributor
Has anyone else had this happen?

Could there be something more than IBS here?

Am I just nuts like it seems everyone thinks?

Yes

Definitely Yes

&

Definitely No

IBS is a symptom, which does have a cause. And you'll find the cause.

"If the blood tests show nothing" go gluten-free? Why wait?

I think you may have crossed a threshold by posting your 1st post. Many here 1st took control of their own health by doing the same.

The diet itself is a test as much as the blood, the endoscopy and the rest.

Why wait to start it? Did you have much gluten today?

You sure don't need to have celiac disease to feel much better off gluten.

I don't want to oversell it but there IS a chance you'd feel better next wkend than you have in years.

Run the test. Go 100% gluten-free . . . .. .. Staaaaaarting . . . . ... . ..NOW!! :)

ravenwoodglass Mentor

Your story and symptoms and the progression you have so far seen are going to be familiar to a lot us. I have to agree with Tom, I would try the diet strictly for a while and see if it helps. Blood tests and endoscopies can give false negatives. Your body will tell you clearly though, in most cases, after you have been off it for a while and then challenge. It is also a good idea to cut dairy out also for the first couple of months or so and then add it in and watch for a reaction. You have come to a great site for info and support, feel free to ask any question you need to no matter how 'silly' or 'gross' you think it may be. You may also want to check out the Celiac Sprue Associations website they also have some good info and a dietary guidelines page that I think is one of the best.

blue angel Rookie

Your symptoms sound very similar to mine and yes i feel like i'm going insane too.

I was diagnosed with IBS 4 years ago and only recently my doc asked me if i had ever been tested for celiac disease,only because all the meds under the sun hadn't cured my so called IBS. Needless to say i had blood tests and it came back positive. I then underwent a gastroscopy/ biopsy of my stomach lining to confirm it. I have been waiting over a month for the results but all i get is "we're still working on it". What is so complicated about finding out what a person can and can't eat for goodness sake. Like you i am in constant pain, tummy looks like a 6 mth pregnancy, itchy forehead severe joint pains, tingly hands and frequent hard motions, sometimes discoloured :unsure: I am also dehydrated even though i drink enough. The problem i have is i can't take gluten out of my diet because they may need to repeat the biopsy as they only got two samples and needed 6. I have however booked with my GP tomorrow and if i don't get anywhere then i am going to take matters into my own hands as it's my body they are messing with and i don't want it past irrepairable. Good luck with your investigations and try to stay positive. :)

HappyMommy Newbie

Thank you guys for replying... I think that is the validation that I needed. I am not going to wait any longer. I will change my diet and see what happens. It is sure a lot better than doing nothing and having people tell me nothing is wrong... :D

mama2 Apprentice
Thank you guys for replying... I think that is the validation that I needed. I am not going to wait any longer. I will change my diet and see what happens. It is sure a lot better than doing nothing and having people tell me nothing is wrong... :D

Your gut feeling does'nt lie... happy eating... gluten-free that is!


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    • trents
      You might consider asking for a referral to a RD (Registered Dietician) to help with food choices and planning a diet. Even apart from any gluten issues, you will likely find there are some foods you need to avoid because of the shorter bowel but you may also find that your system may make adjustments over time and that symptoms may improve.
    • Ello
      I wish Dr’s would have these discussions with their patients. So frustrating but will continue to do research. Absolutely love this website. I will post any updates on my testing and results.  Thank you
    • trents
      Losing 12" of your small bowel is going to present challenges for you in nutritional uptake because you are losing a significant amount of nutritional absorption surface area. You will need to focus on consuming foods that are nutritionally dense and also probably look at some good supplements. If indeed you are having issues with gluten you will need to educate yourself as to how gluten is hidden in the food supply. There's more to it than just avoiding the major sources of gluten like bread and pasta. It is hidden in so many things you would never expect to find it in like canned tomato soup and soy sauce just to name a few. It can be in pills and medications.  Also, your "yellow diarrhea, constipation and bloating" though these are classic signs of a gluten disorder, could also be related to the post surgical shorter length of your small bowel causing incomplete processing/digestion of food.
    • Ello
      Yes this information helps. I will continue to be pro active with this issues I am having. More testing to be done. Thank you so much for your response. 
    • trents
      There are two gluten-related disorders that share many of the same symptoms but differ in nature from each other. One is known as celiac disease or "gluten intolerance". By nature, it is an autoimmune disorder, meaning the ingestion of gluten triggers the body to attack it's own tissues, specifically the lining of the small bowel. This attack causes inflammation and produces antibodies that can be detected in the blood by specific tests like the TTG-IGA test you had. Over time, if gluten is not withheld, this inflammation can cause severe damage to the lining of the small bowel and even result in nutrient deficiency related health issues since the small bowel lining is organ where all the nutrition found in our food is absorbed.  The other is NCGS (Non Celiac Gluten Sensitivity or just "gluten sensitivity") which we know less about and are unsure of the exact mechanism of action. It is not an autoimmune disorder and unlike celiac disease it does not damage the lining of the small bowel, though, like celiac disease, it can cause GI distress and it can also do other kinds of damage to the body. It is thought to be more common than celiac disease. Currently, we cannot test for NCGS. Celiac disease must first be ruled out to arrive at a diagnosis of NCGS. Both disorders require elimination of gluten from the diet.  Either of these disorders can find their onset at any stage of life. We know that celiac disease has a genetic component but the genes are inactive until awakened by some stress event. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% develop active celiac disease. The incidence of NCGS is thought to be considerably higher. I hope this helps.
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