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Chronological Order Of Symptom Occurrence?


lawstudent

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lawstudent Rookie

Hi,

I am new to this board and have found it extremely informative. I am a 36 yr. old female. I have not yet been tested for celiac, but will be talking to my family physician about it tomorrow. I strongly suspect that my maternal grandmother had this, though she never knew it (pancreatitis unknown origin, gall bladder, hypothyroidism, rheumatoid arthritis, severe depression, lactose intolerant) and possibly, though not so strongly, my mother did also (Meniere's disease, pericarditis, borderline personality disorder).

What I am curious about is the order in which others' symptoms have appeared. As I looked through this board and the associated disorders board, I noted many of my symptoms I never would have connected. I have only within the last month had issues with D & C (mostly C). However, I began having serious fatigue problems about 15 years ago, about the same time I also developed geographic tongue and a "butterfly" rash on my face whose severity directly correlates with my degree of exhaustion. ANA tests for lupus were negative. Around that same time, I developed chronic sinusitis/severe post-nasal drip. I have also had a mild degree of lactose intolerance for many years. All of these issues continue today.

In 2004, I moved across the country and began law school. I weighed about 125 when I moved, and quickly dropped to 118 and held there for the balance of the school year (118 is my ideal weight...I attributed the loss to finally getting my life on track and pursuing a dream). However, in July 2005, I started gaining weight for no apparent reason. I gained 20 pounds and inexplicably lost 8, leaving me at about 130 now. What was really odd is that although I weigh only 5 pounds more than before law school started, my waist is 3" bigger (abdominal bloat-I look about 4 months pregnant!) I can also see the fat/cellulite in my thighs and rear. I chalked it up to stress and decided I needed to exercise. I later developed mild abdominal pain, sometimes in my right side, and sometimes like a pulled muscle in my solar plexus. The pain was intermittent. When I then had the D & C, I decided it was time to see the doctor.

Standard blood tests were okay, and there is nothing apparently wrong in my gut per a CT scan and pelvic ultrasound. After doing some research on the internet and talking to my husband, I found out that at the same time my weight issue began, he had switched to a high-gluten flour for making the crust on our pizzas (we eat pizza about once a week). I am now wondering if this could have caused the other symptoms to kick in.

So, did anyone else had non-gastro symptoms first before the gastro system had issues? Could this be celiac, or should I keep looking for other causes?

Thanks!


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Bootin'TheGluten Newbie

Hi...I just am newly diagnosed as of May, which is a total surprise. I haven never had major bowel issues, like my mom, aunt and sister who also are gluten intolerant.

I was sick a lot as a child with strep, mono and either extremely tired or hyperactive. I lost 60 pounds my first year of college which I now attribute to drinking beer and eating garden burgers every day.

I have had acid reflux that was so bad that I would take pain pills and they would bring no relief. While I was pregnant (not taking pain pills at that time of course) with my last child, I was in the hospital 3 times with "kidney stones" although they never had any proof. That diagnosis just fit my pain in my left side in the front. I now know that it was my colon.

I have struggled with major "brain fog" or ADHD all my life. It got worse after having kids and working full time for obvious reasons.

In the last year, my Dr placed me on 5 types of antacids with double dosages trying to give me some pain relief. After an endoscopy, I was told that I had a hiatal hernia. The DR told me that normally people don't even know that they have a hernia and don't feel pain. I burst into tears because I was so hopefull that he would know what was wrong with me and be able to help me.

I then went to a naturopath. She did not notice any celiac symptoms either and began to treat my heartburn pain. I got a little bit better and then completely better while eating a diet of Behler's Broth which is basically homade veggie broth.

Each time that I would introduce other foods (oatmeal, cereal, toast etc) I would become sick. I was completely depressed now and frustrated about my quality of life. I had two kids and was a full time teacher and my pain and lack of eating any protein was starting to take a toll.

When I saw my allergist for monthly shots I asked her to give me the IGG and IGA blood tests for gluten intolerance because I was sick of my family telling me that I was a classic case of misdiagnosed celiac disease. She told me that insurance would not cover the test because I had none of the syptoms and she saw no need for it.

Two weeks later as I was heading out to my birthday dinner, I got the phone call. She told me that my antibody levels were extremely high and that "I shouldn't eat wheat or breath it".

I soon realized that she didn't even know enough to tell me that it was gluten that was the problem, not wheat alone.

Within 10 days of eating gluten free breads and cereals, I felt like Miss America. I had some of my energy and was not in pain.

I have since been "glutened" twice and been very sick from it. One episode lasted two weeks and caused me to have to go back on my acipex medicine to keep my acid reflux at bay.

I feel like my skin looks better and that I am a much more content person.

So...long story short. My symptoms were not what most Doctors are trained to look for.

Good Luck to you, Good Health is right around the corner.

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      Very good pizzeria with small dining room in back of the restaurant. The owner's daughter has celiac & they have gluten free pizza & a gluten free menu. Some items from the regular menu can be made gluten free also. They have a lunch menu which we ordered from & my chicken with spinach & mozzarella over gluten-free penne was delicious. They also have Tuesday night pasta specials & Thursday night chicken pasta specials. We plan on going back for dinner soon.
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      @Aretaeus Cappadocia and @Russ H thank you both for your helpful advice and information. I haven't seen a GI in years. They never helped me aside from my inital diagnosis. All other help has come from my own research, which is why I came here. I will be even more careful in the future. 
    • Aretaeus Cappadocia
      @nancydrewandtheceliacclue, you are welcome. After looking at this thread again, I would like to suggest that some of the other comments from @Russ H are worth following up on. The bird-bread may or may not be contributing to what you are experiencing, but it seems unlikely to be the whole story. If you have access to decent healthcare, I would write down your experiences and questions in outline form and bring this to your Dr. I suggest writing it down so you don't get distracted from telling the Dr everything you want to say while you have their attention.
    • Aretaeus Cappadocia
      @Russ H, I partly agree and partly disagree with you. After looking at it again, I would say that the slick graphic I posted overestimates the risk. Your math is solid, although I find estimates of gluten in white bread at 10-12% rather than the 8% you use. Somewhat contradicting what I wrote before, I agree with you that it would be difficult to ingest 10 mg from flinging bread.  However, I would still suggest that @nancydrewandtheceliacclue take precautions against exposure in this activity. I'm not an expert, I could easily be wrong, but if someone is experiencing symptoms and has a known exposure route, it's possible that they are susceptible to less than 10 mg / day, or it is possible that there is/are other undetected sources of exposure that together with this one are causing problems. At any rate, I would want to eliminate any exposure until symptoms are under control before I started testing the safety of potentially risky activities. Here is another representation of what 10 mg of bread would look like. https://www.glutenfreewatchdog.org/news/wp-content/uploads/2019/10/10mgGlutenCrumbsJules.jpg Full article that image came from: https://www.glutenfreewatchdog.org/news/what-does-10-mg-of-gluten-look-like/
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      @Aretaeus Cappadocia thank you for your reply and the link, that is very helpful to get a visual of just how small of an amount can cause a reaction. I know I am not consuming gluten or coming into contact with gluten from any other source. I will stop touching/tossing bread outside! My diet has not changed, and I do not have reactions to the things I am currently eating, which are few in number. My auto immune reaction just seems so severe. The abdominal pain is extreme. It takes a lot out of me. I guess I will be this way for the rest of my life if I ever happen to come into contact with gluten? I appreciate the help. 
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