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My Long Journey Here....


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#1 Quincypp

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Posted 29 November 2012 - 07:30 PM

My journey began around 2 years ago - went to the dr cause i had swollen lymph nodes, night sweats extreme fatigue and fequent low grade fever and just general feeling like crap. I went from an active (overweight yes but very active) person - worked out 3 times a week, have 3 kids doing stuff to barely able to just go to work. they ruled out some obvious things like TB etc. At that time my hemaglobin was low and had high CRP/ESR values. Dr sent me for CT scan and lymph nodes were swollen so sent for biopsy - neg but reactive. sent to another dr who did gallium scan - came back positive for inflammation in bone marrow. First hema didn't do much except blame my low iron - put me on iron pills (again - have been on before no help and even had shots - no help). CRP was still climbing. Also had a positive FLC test. This all came about in May. CRP was at 41 (not to be higher than 8). Iron was at 6 needs to be at least at 12. I started doing atkins to loose weight - started April 21. so that means no pasta, bread, flour etc. Now I know you can get gluten in other items but had a drastic reduction in my gluten. Since April I have lost 50 pounds. My night sweats have stopped, fevers have stopped. Still very fatigued. Got sent to a new hematologist - who found my ferritin levels were below 10 (paper didn't give a number just the <10) iron had dropped to 5, low folate levels, and my TIBC, saturation and MCH and MCV were out of whack (can't remember which one was high which was low) all indicating I had iron anemia. I had been on the pill for more than 2 years which made my period pratically non exisitant so its not menstral related. i just went off of it last month. I also eat a very healthly diet for iron and folate - big green salads daily or rapini, brocoli, aspapagus and lots of meat etc. Miraculously my hemaglobin has been the highest its been in years at 128! I'm usually never over 110. My CRP had decreased to 20. The dr brought up Celiac - I'm thinking this makes sense and with my CRP dropping with my diet change might make sense. Now I wonder the testing they are doing for celiac if it will show up with this diet change - as I said i am not doing a gluten free diet as i know its hidden in other foods. oh and I have had graves disease so not a newbie to these "wonderful" autoimmune disorders. She gave me an iron infusion as she was very concerned with my low iron levels and put on a folic acid suppliment. She is calling me this week and I will mention about the diet again - i don't think she realized the timing and ask her if she thinks the CRP decline is a co-incidence or not. I went to my family dr today to get a new dosage of my thyroid meds cause it was too high - i guess due to weight loss i need to decrease my meds. My hema was really concerned with the CRP - wondered what was causing all this inflammation and where it was in my body. I also get diarhea frequently for no known reason (never put this together with the initial symptoms that took me to the dr) as i have always had it on and off for years - blamed bad stomach. If i have had minimal gluten for the last 6 months - will this affect the blood results? Does this sound like it good be Celiac? Thanks for any input!
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#2 Ollie's Mom

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Posted 30 November 2012 - 01:33 AM

Hi there, and welcome.

I am not the best person to answer all of your questions (there are a lot of really knowledgeable people here. But I'll give you my 2.

It certainly sounds like you may have celiac. Your symptoms, and you response to the Atkins diet, certainly point in that direction.

As for the impact of your diet on testing results - unfortunately from my understanding, yes, your current diet could lead to a false negative. I think the recommendation is consuming gluten equivalent to two slices of bread per day for at least four weeks prior to testing (please correct me if I'm wrong!).

That isn't to say your test will necessarily come back negative, but it might result in a false negative.
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#3 Celiac Mindwarp

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Posted 30 November 2012 - 04:42 AM

I came to realize I had celiac problems via Atkins too. I think there is a good chance you may have been gluten light for the last few months. This could well affect your blood tests and any later biopsy.


Well worth going back and emphasising this to your doctor and getting advice on how long you need to eat gluten on a daily basis. It is often 6 to 12 weeks.

Come and talk to us if you decide you need an official diagnosis, as it can be hard to reintroduce gluten if you have been off a while.

Lots of us here are self diagnosed, but you need to be aware of advantages and disadvantages either way.

Welcome. Great news on the weight loss by the way :)
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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

#4 Quincypp

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Posted 30 November 2012 - 05:06 AM

I came to realize I had celiac problems via Atkins too. I think there is a good chance you may have been gluten light for the last few months. This could well affect your blood tests and any later biopsy.


Well worth going back and emphasising this to your doctor and getting advice on how long you need to eat gluten on a daily basis. It is often 6 to 12 weeks.

Come and talk to us if you decide you need an official diagnosis, as it can be hard to reintroduce gluten if you have been off a while.

Lots of us here are self diagnosed, but you need to be aware of advantages and disadvantages either way.

Welcome. Great news on the weight loss by the way :)


Thanks for the reply. I kept reading about you had to be on gluten to get accurate test results - so i will see what comes back and then maybe suggest retesting after eating gluten for a while. at least on Atkins the gluten free won't be that drastic of a change. I plan to keep this lifestyle for life - i still have another 70 pounds to go. At least i have an explanation why i felt so tired and exhausted - the low iron and folate were really low - the dr was surprised I was walking around and didn't want me leaving her office until i got the iron infusion - insisted it be that day. I have read other levels can be low vit d or K - i may check those levels. Thanks for listening!.
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#5 Quincypp

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Posted 30 November 2012 - 05:08 AM

Hi there, and welcome.

I am not the best person to answer all of your questions (there are a lot of really knowledgeable people here. But I'll give you my 2¢.

It certainly sounds like you may have celiac. Your symptoms, and you response to the Atkins diet, certainly point in that direction.

As for the impact of your diet on testing results - unfortunately from my understanding, yes, your current diet could lead to a false negative. I think the recommendation is consuming gluten equivalent to two slices of bread per day for at least four weeks prior to testing (please correct me if I'm wrong!).

That isn't to say your test will necessarily come back negative, but it might result in a false negative.


Thanks for the reply! I will consider retesting after going on a normal gluten if the results are negative. There is no reason i should have such low iron or folate based on my current diet. thanks for listening!
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