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Member Since 17 Apr 2004
Offline Last Active Today, 03:02 AM

#895532 Question About Genetic Testing

Posted by on 12 November 2013 - 06:42 AM

We all need to keep in mind that genetic research is really in it's infancy. There is a lot we don't know. Until they start doing genetic testing on every celiac diagnosed there will remain much to learn. I am a double DQ9 firmly diagnosed celiac. I am not alone. I don't have much time so only can provide one link. Here it is.




Evidence that HLA-DQ9 confers risk to celiac disease by presence of DQ9-restricted gluten-specific T cells. 

There are more peer reviewed journal articles out there if one wants to research further.

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#890517 Funny Ridges Or Dents On Nails

Posted by on 02 October 2013 - 12:14 PM

I have not seen anyone! I see my family Dr. thursday I cannot just make an appt. with any Dr. I need a referral from my Dr. He had my toe nail sent out So hopefully soon I will have answers !!!

I hope you hear from the office soon and they have some answers. It sounds like it would be pretty uncomfortable.

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#889847 Yesterday

Posted by on 27 September 2013 - 02:02 AM

It may have been a delayed reaction from the Taco Bell that you recently ate. For some of us our reactions can be delayed by days so it isn't always the last thing we ate that we are reacting to.

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#889241 Does Dh Ever Go Away?

Posted by on 21 September 2013 - 10:05 AM

My DH did clear up completely. It did take awhile and I found I had to be really strict with the diet and I also eliminated iodine. I made sure that all my toiletries and shampoos were gluten free and used a free and clear detergent.

The first year or two into the diet a DH outbreak was the first indication that I had been glutened. Within hours of exposure I would feel the rash starting. After those first couple years the time from accidental exposure got longer and longer. It is now my last symptom, if I break out at all, and the rash is a single tiny spot.

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#885355 Literally Too Tired To Wait Any Longer - Help?

Posted by on 22 August 2013 - 01:31 PM

Welcome to the board. Your story is all to famiiar to many of us.

If I remember correctly you can help with gluten-free foods in the UK if you have an 'official' diagnosis. I don't know how it works but if that is vital to you then do stay on gluten until all your testing is complete

 If you can ask to be put on a cancelation list for the biopsy. Then if someone else cancels their appointment at the last minute the doctor can slide you in.  You could also try asking the doctor if a return to negative on the blood work (if that is positive) along with resolution of symptoms on the diet would be enough to diagnose. Since they won't biopsy if the blood work is negative and the blood work is already drawn you could then start the diet right away.

There can be false negatives with both blood and biopsy so you do need to give the diet a strict shot after testing is done no matter what the results.

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#880883 Gluten Withdrawal: How Do You Function?

Posted by on 24 July 2013 - 02:53 AM

If you have sick days or vacation time you can take you might consider doing so. If not take the advice above and try to rest as much as you can while going through the withdrawl. Remind yourself often that it is a temporary thing and that it will end. Be easy on yourself and let the dust bunnies wait or if you have family try to get them to pitch in on household chores during that time.

Withdrawl is tough but it does end. The one good thing about withdrawl is that it is a clear sign that you need to be gluten free whether testing shows positive or not.

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#879098 Biopsy Results

Posted by on 11 July 2013 - 02:55 PM

The neurological and skin can take a while to clear. You might want to limit iodine for a short time to help your skin clear faster. Do be sure to add it back in after your lesions have resolved. Sublingual B12 seemed to help my neuro issues improve but it still took some time. IMHO you should give yourself at least a couple months gluten free before worrying that something else might be going on. If those issues get worse or you get more neuro issues then you would need to talk to your doctor.

It is good to hear you are already feeling better. You may find the GI gives you an official diagnosis based on your recovery gluten free combined with your reaction to the challenge.

I hope you continue to improve quickly but you may need to be patient with some issues.

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#878966 Is Gs Really In Our Heads?

Posted by on 11 July 2013 - 02:27 AM

Well for me it was at least partially in my head.....I have the MRI scans showing brain lesions to prove it. :wacko:

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#877237 Extremely High Potassium Levels

Posted by on 29 June 2013 - 04:43 AM

You need to talk to your doctor about this. There can be a number of causes some serious, some not. If you are taking supplements with potassium stop until after you discuss this with your doctor.

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#876672 Rice Allergy Too

Posted by on 26 June 2013 - 04:58 AM

Did you come up allergic to a lot of other things also? I ask because before diagnosis I showed reactions to 98 of the 99 things for which I was tested. Within a few months gluten free all but 3 of those allergies were gone. My allergist said that because of the celiac my immune system was in 'hyperdrive' which caused me to react to so many things. Once the gluten issue was under control those other reactions abated. Hopefully that will be the case for you also. Once you have fully healed try adding rice back in a couple of times a day and watch for a reaction. Keeping a food and symptoms log can help as intolerance reactions can be delayed by up to a week.

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#873861 Celiac Vaccine? Not For Me

Posted by on 11 June 2013 - 03:58 AM

 Did you know that despite adhering to a gluten free diet more than 90% of celiacs don't fully recover. It is virtually impossible to avoid gluten. .

I am curious where you get that 90% figure. I have very severe reactions and have been well able to avoid gluten now for many years. Did it take me a while to get the gluten free lifestyle down? Sure it did. It is however quite possible to avoid gluten once you learn what you need to do.  

There are some of us who have residual damage from years of misdiagnosis and damage to many different body organs. That residual damage doesn't mean we haven't recovered from celiac gluten free. It means that the organs that were damaged were not able to completely repair. Doctors are getting much better at diagnosing us earlier though so the numbers of us that are damaged for years before knowing that gluten was an issue are becoming much lower than even 10 years ago.

I personally would not have an interest in a vaccine. If others want to use one that is their choice. My big fear is that after one is developed doctors will push the pharmacutical 'cure' instead of advising people to change their diet. We already see that in folks with DH whose doctors prescribe Dapsone but never tell them the gluten-free diet will also will do away with the lesions without the risk of side effects.

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#873138 Another Symptom I Didn't Know I Had

Posted by on 07 June 2013 - 02:59 AM

I used to smell baking bread before a migraine hit. Sometimes I would get the headache but many times I would just get the visual sparkles. Hasn't happened to me in years now. Did you get migraines before you were diagnosed?

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#872978 Elimination Diet

Posted by on 06 June 2013 - 04:44 AM

I was diagnosed in large part due to a elderly but very savvy allergist who first tested for true allergies. He then had me do an in depth review of what I usually ate and formulated a starting point with only 5 foods, no spices other than salt and only water and the one juice that was part of the five foods. For me he choose all foods I rarely ate and really didn't care for much as he said those would be likely to be least reactive for me. He formulated the starting point so that I would be sure to have enough calories, protein and vitamins. My five foods were turkey, sweet potatoes, peas, pineapple and cranberry juice. Once my symptoms resolved, which took a couple weeks, I was allowed to add in one food per week in a pure of a form as possible. Since intolerance reactions are often delayed he would only let me keep a food in after I had consumed it 3 times a day for a full week with no reaction. 3 days after I added cream of wheat back in the results were severe. He then referred me back to my GI for official confirmation of celiac.

It isn't always easy to find an allergist who will also deal with intolerances but for me the search was well worth it.

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#871479 20 Year Old Male With Short Stature

Posted by on 29 May 2013 - 02:25 PM

Ask your doctor to take an X-ray to see if your growth plates have fused. If they haven't you may still gain some height. Usually it is just an X-ray of your hand and wrist. Some guys plates don't fuse until their early twenties. I will keep my fingers crossed for you.

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#869704 Lost A Parent To Celiac

Posted by on 20 May 2013 - 02:55 AM

So sorry to hear of your loss. I think there are likely many of us who have lost parents to causes that may be linked to celiac. I lost my Mom young to cancer and lost my Dad last month. Since I have two copies of the same celiac gene both of my parents also had that gene. My Mom undoubtedly was an undiagnosed celiac. Her symptoms were the same as mine became before diagnosis. She also suffered for years. When I got my Dad's death certificate I found that he had bled to death from a GI bleed. I don't know if blood clots are associated with celiac but kidney issues can be.

I do know that my GI doctor told me that if I hadn't been diagnosed when I was I would have been 'one of those celiacs diagnosed by autopsy.

I know you are suffering and nothing any of us can say will ease your pain. Know that you are in my thoughts.


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