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Help Me Please!
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Hello Everyone, I am so desperate for someones opinions, thoughts and advice!

Over 2 years ago I started having diahreah followed by constipation. It would trade off with each other and just be a rare occasion. Every Doctor told me it was because I ate poorly and was overweight. Well I got pregnant with my son, and then they kept telling me it was symptoms of pregnancy. I had my son and guess what? you got it! It was still happening. It went from being a few times a month to weekly, to daily diahreah, and now several times a day. I can't even leave my house. Finally my husband had enough and I went to a GI doctor he did a colonoscopy and found nothing wrong, so he basically said oh you have IBS take 8 immodium a day, fiber and a probiotic, you will have this forever and just live your life as normal as possible. I am 27 have 2 kids and a family, a job, apparently I am suppossed to do most of that from the toilet or my bed :( (end sarcasm). Well after my colonoscopy, I bought a book for IBS and sat and read pages and pages on IBS so I started following this "IBS Diet" , considering I had just been cleaned out and everything appeared healthy I could finally get my life back. I still was feeling terrible all week with eating these "IBS SAFE" Foods and felt really discouraged. Yesterday I had a ton to do outside of the house so I was determined not to eat anything until I got home and was near the bathroom. I ate a 4 inch sub from subway, within 30 min, I got a 101 fever and was nauseated, I laid down in bed fell asleep and was woken by the worst pains and diahreahh, my eyes were swullen and itchy. Everytime I ate anything this week that contained gluten I got a fever.

My other symptoms over the past 2 years have been, constipation, diahreahh, swollen eyes, hair loss (they also told em its my hormones form my son eventhough hes 2), unexplained fevers, acne ( ihave never had it before), feeling full even if I barely ate, so full i felt like my stomach was going to expload, gassy, bloated, pains and cramping,

Do you think gluten could be the culprit??? I ate gluten free today and did not get any fevers today, at all. This will be the first time in a very long time this has happened.

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I think you may have just solved your mystery! Your symptoms are definitely consistent with celiac or gluten sensitivity. My eyes get swollen, and I get feverish, too, when I've accidentally ingested gluten. Of course, the diarrhea followed later by constipation is also a problem as is the joint pain, muscle pain, bone pain, headache, stuffy nose, and foggy thinking. Actually, I end up sick in bed for a few days each time it happens.

You've come to the right place to find out how to change your life for a healthier you. Find out which foods contain gluten and try a gluten-free diet for awhile. If your symptoms resolve, then you can seriously begin to make changes in your kitchen to ensure that you don't get cross-contamination. In the beginning, it's usually easier and less expensive to eat natural foods that don't contain gluten. Natural foods have the vitamin/mineral content that you may be lacking, and gluten-free substitutes might not agree with you in the beginning.

Good luck...and please keep us apprised of your progress.

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I would also agree that you have solved your mystery, but you also need to find a good doctor who is knowledgeable in Celiac disease. Finding the right doctor is so important, it took me over a year to find a good gastro, but they are out there. Be an advocate for your health, this is your life and your body, only you know when something is wrong. I wish you much luck, and sending out big hugs and healing thoughts!!

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I thought I'd add..since you have been eating gluten you should call your Dr. ASAP and ask for a full Celiac blood panel to be drawn. A colonoscopy won't show Celiac disase. It does it's damage in the small intestine.

Most Dr.s don't think to check for it.

It sure sounds like gluten might be your problem?

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You should also contact Entero labs and get a stool based test concerning gluten intolerance. It often does not show in blood tests.

The bottom line however is to just go off the gluten completely and see if you do better or not. Obviously nothing else is working. Tests don't always show if one is severely gluten intolerant. Celiac has been given a narrow definition that does not fit everyone that needs to be off gluten. Dr. Vicky Petersen is a good U-tube resource by the way.

Going off gluten means going off all trace gluten too, even your lipsticks and chapsticks and shampoo and body lotions often have gluten in them. Check out the list of hidden gluten ingredients here on celiac.com. Avoid using wooden chopping boards, wooden utensils, wooden bowls as well as fine mesh metal collanders etc. that have been used with gluten, old toasters etc. Your oven is also suspect assuming you have done any glutenous baking. You can put it and any iron pots in it for an hour on the self cleaning cycle to get rid of the gluten that is baked in. Or use a new gluten free toaster oven. Basically you have to clean you kitchen and at least have a safe gluten free area for your stuff that you use.

What many do here is to just eat things like chicken and brown rice and veggies at first--all cooked from scratch to see how they do, as well as to heal since so many foods have trace amounts of gluten in them--often even things that claim to be gluten free. Be careful too of spices. Its best to buy them whole--like fresh ginger -- until you find a truly gluten free source.

Good luck! Even though I don't wish gluten intolerance on anyone, its better to find the hidden cause of all your suffering so it can stop and you can begin to live your life again!

Bea

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Good advice given already.

I would most certainly request the full panel of blood testing. Some doctors hesitate to order this panel or even think of it. My sisters' gastro only gave in and ordered it for her because I am celiac. He told her it was doubtfull she had it too. Crazy!

I was told after my colonoscopy that I had IBS. I went on the diet for it and my pain was worse, so I started eating salads. I felt better and told the doctor, only then did she order the panel for Celiac.

Best wishes to you! Please keep us updated!!

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Before diagnosis I was also barely able to leave the vicinity of the toilet and I couldn't work. Hard to do on the toilet, as you said. Now I am working again. My stupid doctor told me it was IBS too. Good for you to have figured it out on your own.

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You need to stay on gluten until the blood tests are done though. They aren't accurate if you re off gluten before testing. After the blood is drawn you can go gluten-free right away. Unless you decide you want the endoscopy also in which case you should wait for that to be done. Not everyone needs the endoscopy. If you don't need a doctors diagnosis, then your own bodie's reactions are a pretty good reason to not eat gluten.

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Just wanted to add that salicylate sensitivity can also create IBS. I have both quite severely--most don't, but some do. Its not uncommon for those with SS to at least have some gluten sensitivity. Might also be a direction to look into...

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Hi and welcome! It sounds like you've had a rough couple of years, but maybe you're finally on the right track to feeling better. If you've been eating gluten regularly for the past few months call your dr and get a full celiac panel done ASAP! On the blog linked from my profile I have a post called "make the most of your doctor visit" and a series on celiac testing myths including "doctor knows best" that outlines what tests to get. I'm hoping to get another one up today on false negatives as well. I hope you can get some good test results soon!

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Hi and welcome! It sounds like you've had a rough couple of years, but maybe you're finally on the right track to feeling better. If you've been eating gluten regularly for the past few months call your dr and get a full celiac panel done ASAP! On the blog linked from my profile I have a post called "make the most of your doctor visit" and a series on celiac testing myths including "doctor knows best" that outlines what tests to get. I'm hoping to get another one up today on false negatives as well. I hope you can get some good test results soon!

I had a celiac test ran back in march and the doctor said it was negative, I am really disappointed in my GI who did not go ahead and do an endoscopy at the same time as my colonoscopy and think to test me for celiac. I really feel like my doctors have failed me recently, and am going to go on the hunt for a new team.

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    • I found when I went gluten free I started eating more dairy and that gave me worse stomach aches and bloating than the gluten did. So now I have to avoid gluten and dairy.  Maybe you have a similar problem with something you are eating.  I hope you feel better soon.  
    • Hi! I received my "official" celiac diagnosis last week. I had an endoscopy last month that was originally looking for ulcers and h. pylori, but they did some biopsies of my duodenum since they were in the neighborhood and the biopsy came back "consistent with Celiac's disease" and later. They urged me to get my blood checked and follow up with my primary doctor. My blood work came back negative, but my doctor was confident it's Celiac so told me to stay away from gluten. I've been completely gluten free (or to the best of my knowledge) for 2 weeks now, and my results are mixed. At first, I felt great! My stomach was no longer CRAZY bloated once I stopped eating pasta and bread, my acne started healing, and the red rash on the back of my arms started to fade. That was the first few days. Lately, though, my acne is once again flaring up and I've been SO EXHAUSTED. I feel so tired all the time. Even now I have fatigue in my head, limbs, and I could hardly walk or move my body earlier today. I'm overweight and I like to go to the gym, but what used to be an easy workout for me is kicking my ass! I used to go to the gym and tear it up: HIIT on the treadmill followed by 40 minutes of heavy weight lifting. Now I can hardly finish 3 reps in my first set without feeling like a nap. I can't run anymore because my body feels clumsy and heavy. Also, I'm still bloated. I don't suffer from painful, acute bloating, but I struggle to pass gas and I look like I have pregnant belly. I think I'm also retaining water all over my body, and I'm not sure if that's normal? For whatever reason, I have this belief that water is mainly retained in the core and not arms, legs, and face. Anyway, I'd love to hear what you have to say/what you've experienced. Is this typical to first going gluten free?
    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
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