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Stepping Out On A Limb And Self-Diagnosing...crazy?
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Hello All! I am relatively new to the forum. I joined a couple years ago after our son was diagnosed with celiac disease and couldn't pull myself away from the computer for two days! I was a sponge on this forum and am so thankful to this day for all the information everyone offers. I'd like to share a bit of my background with celiac....

On his 16th birthday, our son stood only 5'3". As a baby he was consistently in the 75-90th percentile for height, then began to show up in the 50th around middle school, and by high school was in the 10th percentile! Enough was enough. Our fabulous primary care doctor talked to us for an hour (like no one else was waiting) and listened to my concerns about growth hormone?, delayed puberty?, thyroid?.....He wanted to do blood work first, and mentioned that he had recently had his first patient with celiac and was doing a lot of research, and that our son's short stature and delayed puberty COULD BE a sign. Sure enough....tTg level was high so an endoscopy was scheduled. The initial visual seemed normal, but the biopsies showed celiac. After going gluten-free, he has grown 7 inches in 2 years and is still going!

We found out a year and a half later that my dad, who was 72 at the time, also had celiac disease. He had become very ill and lost over 40 lbs in a month! He said it felt like food was getting stuck (pointing to the middle of his torso), so he could eat very little and it had to be soft so it would go down. Long and sad story, but we eventually found that my dad had a blockage, and then that the blockage was a tumor outside the duodenum, and then that the tumor was cancer in Stage 4B. The biopsy came back as pancreatic, and we lost him 3 weeks later. Silent celiac.....

Right before daddy died, my sister was diagnosed with dermatitis herpetiformis (or DH). She was told she was gluten intolerant and immediately went gluten-free, for the most part. In all the reading I had done after we found out about our son, I had never read that DH is a confirmation that you have celiac, but yesterday I started a little research again and read it in several places! So now I have to call my sister to tell her not to be flippant about her diet. She really is pretty careful, but enjoys the occasional beer.

All of this leads to me and my symptoms. I have not had an endoscopy, but am feeling as though I probably don't need one. I would appreciate if those of you more experienced would give me your thoughts. I've wanted "to just know for sure" for a long time, but think I already do. Here are my symptoms:

Fatigue (heavy, but not totally debilitating)(since a teen)

Anemia (when pregnant, and diagnosed about 7-8 yrs ago)

Painful periods (ablation 3 yrs ago helped with heavy bleeding)

Brain fog, forgetfulness at times, lack of focus at times

Depression (no meds)

Trouble sleeping

Joint pain (last 3-4 years)

Muscle weakness

Slight scoliosis

Geographic tongue

Psoriasis on arms/hands/occasionally legs

Unconfirmed DH (small spot that recurs right above my butt (sorry) and itches like crazy for days!)

No abnormal digestive issues

I'm not looking for a diagnosis, as I know it cannot be given here, but I do value your thoughts. The main things I find concerning about my own list are the family history, anemia, possible DH, and the geographic tongue. I read an article a while back that geographic tongue should be a red flag for celiac disease that all dentists should mention to their patients. Thank you in advance for any comments!

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i'm curious-what is a geographic tongue? Can you see maps on it? lol. Seriously though, curious what that is. Also it sounds like you should get tested for sure. Or eliminate gluten for a month to see how you feel?

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I don't think your self-diagnosis is at all crazy, with your family history. We know the genetic predisposition had to come from you or your husband, and you are the prime candidate. But don't go gluten free, if you don't think you will believe yourself in the future, until you've been tested, because once off gluten it's hard to go back on.

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Mushroom's answer is so right on.....also may I suggest along with celiac testing, you do a full blood work-up.. Vit D, B-12, thyroid (not just a TSH),Calcium, Iron, ferritin for starters, CBC with dif, lipid panel, .crp....

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Mushroom's answer is so right on.....also may I suggest along with celiac testing, you do a full blood work-up.. Vit D, B-12, thyroid (not just a TSH),Calcium, Iron, ferritin for starters, CBC with dif, lipid panel, .crp....

Oh, talk about brain fog and forgetfulness! I've had bloodwork done in the last 6 months. Everything was normal, though my iron level was at the very low end of normal and I take iron several times a week. I also had genetic testing done almost two years ago and have both the DQ8 and DQ2 markers. I KNEW I left something off the list!
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I hope you will soon be having a happy gluten free life! Keep your mind on analyze!

Diana

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Family history above you, below you, and to the side of you as well as genetic on paper for yourself should be diagnosis enough for you to never second-guess yourself in the future...some of us don't have the familial support or resources. If you are serious about wanting to feel better, it's not crazy go gluten free as soon as possible...just know that if you end up having tests performed after giving up gluten, that they may give a false negative because you will no longer have it in your system as you do today. Good luck!

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Your symptoms, genetics and low iron indicate celiac disease. I agree that completing all testing before eliminating gluten is the best option. Once gluten is removed this starting data is lost - for some - including me - data has helped when removing gluten did not bring healing or symptom improvement right away.

Make sure you have had complete celiac antibody testing:

tTG - both IgA & IgG

EMA

DGP - both IgA & IgG

Along with all the nutrient testimg Mama mentioned - I would add:

Vit K, copper, zinc, CMP

Ask for written or electronic copies of all test results - pay attention to results within "norrmal range" yet on the very low or very high sides of "normal" - given your father's history I would not dismiss the idea of an endoscopy - go to a GI that specializes in celiac disease if possible for this.

Once testing is complete - remove ALL gluten - I usually say for three months - my guess is it will be for good for you.

Any other children? Siblings? Nieces/nephews? Everyone in your family should have complete celiac panels - every 3 years - more frequently should symptoms arise.

Hang in there and keep reading and asking questions - brain fog makes it a bit tougher to analyze things at times - we have been there and can help :)

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I agree that completing all testing before eliminating gluten is the best option. Once gluten is removed this starting data is lost - for some - including me - data has helped when removing gluten did not bring healing or symptom improvement right away.

Make sure you have had complete celiac antibody testing:

tTG - both IgA & IgG

EMA

DGP - both IgA & IgG

Please share...I am very curious to learn how the data from these tests helped you when beginning on a gluten free diet, how so?
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Had I not had initial data - I would have had nothing to compare after removing gluten. For a very long time the only improvements I had were serological. Same with my kids and grands - we test barely possitive or within "normal" ranges with so many tests - comparison has provided the most info we have ever had. For instance my b12 always hung around 180 - for decades - it has been over 750 for the past year or more. My celiac antibodies were all reduced at 3 and 6 mo checks and close to non existent at a year gluten-free.

Sadly I continue having annual endoscopies as it has taken over three years to begin to heal the total atrophy found when I was finally diagnosed.

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Family history above you, below you, and to the side of you as well as genetic on paper for yourself should be diagnosis enough for you to never second-guess yourself in the future...some of us don't have the familial support or resources. If you are serious about wanting to feel better, it's not crazy go gluten free as soon as possible...just know that if you end up having tests performed after giving up gluten, that they may give a false negative because you will no longer have it in your system as you do today. Good luck!

Thank you, saaa-wheat! I had never thought about my family connections to celiac that way, but I can't get the visual of your words out of my head. You're right that I am absolutely surrounded! I have decided to skip the endoscopy because I truly feel there is plenty of "evidence" without it. In my mind (you know, the one with brain fog...) the endoscopy would have been CONFIRMATION, which I crave. But in all honesty, I'm tired of trying to convince myself that it may NOT be celiac when all the indicators say it is. Why do I need one more?? I feel lighter already! Which is great, because I need to lose about 40 lbs. ;)
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i'm curious-what is a geographic tongue? Can you see maps on it? lol. Seriously though, curious what that is. Also it sounds like you should get tested for sure. Or eliminate gluten for a month to see how you feel?

In my case, geographic tongue means I have cracks all over the surface of my tongue -- kind of looks like a road map, yes. Others will have round spots. I have areas on my tongue that will hurt for a short period (about 15-20 minutes) after I eat certain things, like pineapple, too many tomatoes, sometimes even bananas! Kiwi makes my mouth "itch" but I love it so I tolerate it occasionally. Mildly spicy foods that most people can tolerate will set my tongue on FIRE! Even ice cream, which is my weakness, will make me uncomfortable for a time. My theory is that these foods get down deep into the cracks on my tongue and affect me more than most people. My oldest son who has celiac also had geographic tongue, and his has disappeared since going gluten-free. I'm hoping to see improvement with mine as well. There are several articles written on the connection between GT and celiac disease.
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    • 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!
    • Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year.  You've been given great information. Just breathe and then again, breathe. You're going to be fine. 
    • It is the only thing you have eaten, so it can't be anything else?  I eat it with no issues so I am not sure how you can be certain that is the problem.  All I am saying is that its sort of "your word against mine and the company's word".  
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