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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
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    • Judy M
      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
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