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What Do I Do Next? Help!

celiacs gluten free gluten intolerance

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#1 karencuba16

 
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Posted 22 July 2013 - 07:55 AM

I need help and don't know what to do next. I have been tested for allergies and came back positive for milk, wheat, peanut and egg allergies. On a scale of 0-5 (5 being worst)wheat is a 2. The other allergies are 2 or below as well. Wheat is the only one I have reactions to. When I eat wheat I get migranes, joint pain in knees, elbows, and ankles, I feel tired and weak, within the past 3 months I have started to get stomach cramps that last for days and blood in my stool, sometimes so much it looks like I've gotten my period. I even get the rash that is common with gluten intolerance dermatitis herpetiformis. To me this seems a little more serious than an allergy. I had a blood test for celiacs and it was negative. I wasn't eating gluten at the time and I hear that can give a false negative. All my doctors say it's just an allergy and they couldn't even diagnose my rash I had to look it up online. It's definately what I have when I don't eat wheat it disappears. Should I insist on further testing?
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#2 nvsmom

 
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Posted 22 July 2013 - 10:41 AM

Welcome to the board.  :)

 

You are absolutely right that, for most, you must be eating gluten in the 2 or so months prior to testing or the results will be inaccurate; in fact, celiacs who have been gluten-free long enough will have negative tests. If you want to test for celiac disease, you will have to eat about 2 or more servings of gluten per day for a minimum of 6 weeks. It sounds like you are eating gluten now, so it might be a good time to test.

 

The celiac panel is:

  • tTG IgA and tTG IgG
  • DGP IgA and DGP IgG
  • EMA IgA
  • total serum IgA
  • AGA IgA and AGA IgG

The first three indicate that your body is trying to create intestinal damage (as seen in celiacs). The IgA is a control to make sure you make enough IgA for the first three tests to be accurate, 5% of celiacs don't. The last test is an older test that indicates gliadin sensitivity and is thought by some to work for celiacs and those with non-celiac gluten intolerance (NCGI).

 

The migraines, fatigue, joint pain, stomach cramps and hemorrhoids (fresh blood on stools) are all associated with celiac disease and NCGI. The rash could be biopsied if you think it is dh - I *think* they take a biopsy from beside the rash area... don't trust me on that though.

 

It's up to you if you want to do further testing. Testing will usually only show celiac disease though so even if you have NCGS, your tests will be negative even if you are suffering. Some people like to know one way or another though (I am like that) so if it is going to bother you, I think you should get tested, and then go gluten-free (for 6 or more months) regardless of the results....As an aside, I have all of your symptoms which makes my further think that you are a celiac. Good luck!


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#3 karencuba16

 
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Posted 22 July 2013 - 11:08 AM

Thanks for your input. I know a few people who have gone gluten free, but by choice not because the they celiacs so its nice to talk with someone in the same boat. I am the type of person who needs to know, especially if I'm damaging my intestines. I have been eating gluten but its only been about 1 serving per week. This test is aweful! Like you have to purposefully poison yourself to get acurate results. Not sure if I can increase my intake. It hurts too much. I might have to live without knowing.
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#4 dotsdots

 
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Posted 22 July 2013 - 12:19 PM

Thanks for your input. I know a few people who have gone gluten free, but by choice not because the they celiacs so its nice to talk with someone in the same boat. I am the type of person who needs to know, especially if I'm damaging my intestines. I have been eating gluten but its only been about 1 serving per week. This test is aweful! Like you have to purposefully poison yourself to get acurate results. Not sure if I can increase my intake. It hurts too much. I might have to live without knowing.

I am new to this site. My granddaughter has trouble with gluten, and my daughter has been reading up on celiac disease. She thinks I might have it, or at the very least am gluten intolerant. I have done some reading also and am surprised at all the symptoms that I have that don't seem to be related. I thought you had to have diarrhea and be skinny to have celiac disease. I have suffered with heartburn and constipation a lot of my life and am overweight. However, I was diagnosed with chronic fatigue syndrome and irritable bowel syndrome as an adult in my 30's. I have poor teeth and have suffered from oxalate kidney stones since my 30's also. I have been hospitalized 4 times for kidney stones, not including the ER visits. I pass about 3 a year on average that I can see, plus silent ones. I have been told my ureter from my left kidney is scarred due to passing so many stones. I have brain fog at times, and I have fungus in my toenails. I suffer from eczema - with blisters - on my hands. 

I would like to know if it's better to just cut out the gluten or get tested. Part of me really wants to know, so I'm leaning toward getting the blood test. I did cut way back on gluten not long ago and noticed an improvement in my eczema. Does anyone have a suggestion?


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#5 dotsdots

 
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Posted 22 July 2013 - 12:22 PM

I posted earlier, but as I am new, have to wait a while. Just thought of one more symptom - I've shown up several times as being anemic on my blood tests...


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#6 Celiac Mindwarp

 
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Posted 22 July 2013 - 12:29 PM

Hi dotsdots

Welcome to the forum :) .

I hope you find some answers here, remember you can always start your own thread if not to ask questions not covered in blood testing.

 

To both of you - if you are easting gluten now, a blood test as outlined above could be very helpful. If it should come back negative, think about the possiblity of Non Celiac Gluten Intolerance (NCGI). which had many of the same symptoms, and casn be extremely debilitating.

 

Good luck, ask lots of questions :rolleyes:


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- Symptoms from 2001, maybe before. Across 20+ years, these have included, vomiting, D, migraines, headaches, recurrent miscarriage, inflammation problems (failure to heal from injuries) brain fog, anxiety and more!
- Elimination diet using Atkins, 2003 – excluded wheat, caffeine, quorn. 2005, excluded sesame, alcohol
- Started diagnosis route April 2012, blood tests, endoscopy – said negative, gluten challenge, clearly something very wrong, had to stop after 3 weeks.
- Gluten Free, August 2012, Corn Free, September 2012. Removed most processed gluten free foods.
- Genetic testing, December 2012 – negative – Diagnosis – Non Celiac Gluten Intolerance (NCGI)
- Elimination diet, January 2013 – all of the above plus dairy, legumes, all grains, sugar, additives, white potatoes, soy. Reintroducing sloooowly now. Health improving.
It's not that I'm so smart, it's just that I stay with problems longer. ~Albert Einstein Posted Image

#7 karencuba16

 
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Posted 22 July 2013 - 09:32 PM

I posted earlier, but as I am new, have to wait a while. Just thought of one more symptom - I've shown up several times as being anemic on my blood tests...


I have a skin disease that is unrelated to gluten sensitivity. For this I have seen several dermatologists, a few primaries, my OBGYN, and a rheumatologist. Each doctor is puzzled as to why a 28 yr old has hair loss and anemia. I recently found out these are symptoms of celiacs. Doctors dont have all the answers and sometimes they dont want to hear you, but if you think you might know whats wrong, speak up until you get through.
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#8 spirit_walk

 
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Posted 22 July 2013 - 10:20 PM

If one were Celiac and continued to eat gluten over a long period of time, could it create other food allergies? And if so, even if I'm no longer eating gluten, could I still be suffering from joint pain b/c I'm eating food that I've become intolerant to? I ask b/c I started having joint pain a few years ago. Very mild for a few years (would come and go) then it became very severe a year and a half ago. I've removed gluten completely for the last ten months. Initially, I felt like it was helping a lot. I was also told that I was suddenly intolerant to like 30 different foods. Now I'm starting to have a lot of joint pain again, and I have not been eating gluten. Could eating gluten long-term have disrupted my body to the point that other foods are doing damage? I have a lot of the same symptoms that Celiacs have. I've been thin my entire life, had mouth ulcers, constipation, hemorrhoids, bloating, and felt tired all the time. The joint pain and popping are now the major hurdles. But, if I haven't experienced a lot of stomach issues (although I had a lot as a child growing up), could it still be Celiac? Thanks.


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