Gluten Intolerant? Highly sensitive? Headaches, extreme leg fatigue, blood tests with slightly low WBC + Platelets

[isitgluten]

I'm 25. Blood work looks great besides slightly low WBC + platelets and slightly elevated billirubin (Gilbert's syndrome diagnosis).

My celiac blood tests came back completely normal...no further testing or investigation of gluten issues from dr. Sent to hemotologist for further testing (awaiting results)

2 years of horrible migraines, tingling in hands, feet, fingers and toes (not constant), severe leg fatigue/pain (constant), severe general fatigue, dizziness upon standing, extreme heat/sun intolerance (causing migraines, fatigue, and nausea), extreme brain fog. *Diagnosed with ADHD, anxiety, and depression during the 2 years of these symptoms.*

*Mom says she also had these symptoms begin approx. my age. Now she has severe mobility impairments (non-MS), non-epileptic seizures, even more severe heat intolerance. Seen many doctors, specialists etc...clear presence of autoimmune issue but not sure which yet.*

Started magnesium supplement (500 mg), per GP advice as "hail mary" to help sleep. I was completely taken aback when GP wanted to test for celiac. After doing the blood work BEFORE getting results i went gluten free because "it couldn't hurt" and I would've done anything to be okay on our 5 day hiking/camping trip to a local nat'l park which had been pure hell for me on other occasions during these 2 years of symptoms. 

-Combo of magnesium/gluten free and I have not had a migraine since....fairly severe headaches that are relieved with upper back/neck massage (true blessing after years of migraines)

-no more heat intolerance

-no more tired legs/extreme fatigue

-anxiety and depression completely lifted as well as severe ADHD symptoms (although we had no doubt i had minor ADHD symptoms which are definitely still present).

Questions:

-I was accidentally cross contaminated on 2-3 occasions and got a mild headache and upset stomach (mild stomach ache with either constipation or diarrhea).

-Had same reaction after eating Safeway brand gluten free spaghetti and costco salad mix. Checked both that say they are gluten free.

My husband is just grateful I am finally feeling better and checking back into life, but he has voiced that Non-celiac gluten problems shouldn't be effected by cross contamination. What has your experience been?

One of the times I got cross contaminated I got the classic headache. Next evening I started having strep throat symptoms. Not super surprised as my husband is a carrier and my WBC is mildly low. Have you ever experienced catching sickness after being glutened? Could being glutened make me more susceptible?

Ate an entire personal pizza to test if I would get a reaction after nearly 1 month gluten free (except unintentional cross contamination), Didn't get headache, but had few days of horribly tired/fatigued legs, extreme general fatigue, mild tingling return in extremities, nausea....nausea....nausea, upset stomach, more severe brain fog +ADHD symptoms, and abnormal BM. The problem is that I can't prove these were all gluten related symptoms since I recently finished penicillin antibiotic (digestion upset, abnormal BM is side effect) and also had PMS like symptoms the day I ate the pizza (can't prove PMS as I do not get periods due to IUD).

Do you get a different or more severe or different AND more severe reaction when you eat a larger quantity of gluten?

 

 

[trents]

isitgluten, welcome to the forum.

Yes, it sounds like you probably have NCGS (Non Celiac Gluten Sensitivity). No, it is not necessarily true that you would not experience the symptoms you describe only when eating larger amounts of gluten. You might be sensitive enough that CC could produce those symptoms. But it is also true that you might have other food intolerances.

[Scott Adams]

Welcome to the forum. If you got a blood test for celiac disease feel free to share the results. Sometimes negative isn't fully negative (perhaps you had elevated antibody levels, or low serum IgA which can skew the results, and perhaps they didn't do a full celiac disease panel. 

For most people with non-celiac gluten sensitivity they must remain 100% gluten-free, just like those with celiac disease, if they want to avoid the negative symptoms associated with it. Unfortunately there isn't a test for it yet.

[isitgluten]

7 hours ago, Scott Adams said:

Welcome to the forum. If you got a blood test for celiac disease feel free to share the results. Sometimes negative isn't fully negative (perhaps you had elevated antibody levels, or low serum IgA which can skew the results, and perhaps they didn't do a full celiac disease panel. 

For most people with non-celiac gluten sensitivity they must remain 100% gluten-free, just like those with celiac disease, if they want to avoid the negative symptoms associated with it. Unfortunately there isn't a test for it yet.

 

[Scott Adams]

So your tTg was negative, so likely no celiac disease, but given your symptoms you can’t rule out NCGS, so perhaps continue your gluten-free diet, as it seems to help.

[Sherry Mason]

I have Wheat allergy but no blood test for celiac. My niece and her children celiac. I am gluten intolerance if not celiac by the elimination diet. But after covid,  my extreme fatigue has me eating junk food again and I feel so bad! Gained 30 lbs, joint pain,  migraines, brain fog, tinnitus,  sometimes vertigo, mood swings, heart palpitations when I try to be more active.  Was not tested for allergy until age 50. Ate Wheat my whole life. I'm addicted to wheat like someone sticking a street drug up their arm. I know 2 weeks worth is long enough to help the cravings to start to subside. Dairy also is addictive for me. I need a rehab for junk food! My 88 yr old mom insists on having it and my willpower isint strong enough to resist eating some after about 3 to 6 days! I did it 3 years ago and all my RA pain,  exema, add, brain fog, fatigue lost 100 lbs and got my mobility back.  I'm taking probiotics again. This all started post covid after 3 pks of steroids for severe tmj.  Any suggestions are appreciated. 

[trents]

Would getting tested and finding out you were positive for celiac disease strengthen your resolve to not eat gluten containing things? Since you are continuing to eat gluten, now would be the time to get tested rather than when you were on the gluten free bandwagon. Many people need the official diagnosis to prevent them from cheating on their gluten free die because the can rationalize that their symptoms must be due to something else.

Other than that, maybe some counseling for support. Lack of self-control when it comes to eating is often driven by psychological/emotional factors that turn food into a kind of medication. I'm sure you are familiar with the term "comfort food." Hope this doesn't sound critical or condescending. I don't mean it to be.