Help! Still sick

[Jherm21]

So where oh where to begin. I read all and everyone's post because as a community I think it's extra special when people have others they can vent to that understand how each other are feeling. Ok enough with the gushy stuff. Down to business. I have been gluten free for almost 9 months October 4 (im counting)  the relief I have felt is diarhea is gone. Another good positive symptom and sign is I'm 5'7 so at diagnosis I withered away to about 108 (very sickly all muscle was gone) I now I got weighed in at 122 today! And I'm literally eating whole foods some extra food maybe some chips here and there but I've always been a chip person. I haven't weighed 122 since I was 18 (Im 29) so that part had me excited. Except for the last few weeks my fatigue has come back with a vengeance. I don't know where it's coming from, i got my thyroid (just tsh until I see endo at end of month when she will check all thyroid hormones) and it was at 3.45 I'm not on thyroid hormone so I wonder if this is causing my fatigue and fast weight gain since I started gaining weight pretty fast (even though I needed it, it happened all at once over a month) I'm also having severe hair loss. I had my iron checked and it's all went up except my ferritin which was at 15 last week's blood test. My symptoms consist mainly of hair loss, shortness of breath, dizziness especially from sitting to standing, really bad raynauds attacks everyday all day (on feet) neck pain (severe) now new symptom started about 4 months ago the back of my shoulder bone to the elbow and clavicle bone are all hurting so so bad. I don't expect anyone to know what's wrong with me I just felt like venting. Also I was prescribed neomycin and xifaxin because a hydrogen breath test showed high methane in my test but normal level hydrogen so the actual SIBO test was negative but she was confused about the high methane and said I may benefit from the antibiotics. I still am waiting to get them from my insurance. I'm a seronegative celiac with positive biopsy. We've already gone through and rules out other scenarios for the villous blunting and IEL's. Any info would help me. I feel so weak some days. And all doctors want to say it's anxiety. I've heard that for far too long I actually went to a hematologist today because I've been freaked out the last year my wbc have been at 3.3 which my lab range is 4.5 and above to whatever the higher limit is. He told me to do a bone marrow biopsy because of the pain in my shoulder and arm and my "low wbc "which he wasn't even concerned about. Is this necessary right now or am I just spooking myself. Is it common to have low wbc. Could it be the extra methane in my breath or whatever. Any help would be great. Listen I have friends and family but they won't listen to all this. They think most of this is in my head. 

[Ennis-TX]

Did they check for candida? And what about your other levels? Keep a eye on your food diary, start rotating foods a bit more, see if you got a new intolerance. They seem to random come and go with me like REALLY random...last month was lettuce which is fine when I brought it back yesterday.  Anyway other thoughts, make sure your getting a bit of everything, I sometimes slip and do not get enough vitamin A, Vitamin K, lycopene, selenium, or zinc when I rotate nuts, seeds, and veggies sometimes reaching a combination that is lacking one mineral or vitamin.   I really do find those "Super Foods" that you need to up a bit for me it is oddly nutritional yeast, kale, cocoa nibs, coconut, pumpkin seeds seem to really boost how I feel.   Sometime a probiotic and enzymes are a huge help.

Might try a low carb (no fruit, grains, sugars, starchy veggies) for a week or two and There is this Candidia FX stuff on sale on Amazon that worked wonders for mine.

There is a app for your phone on google called deficiency finder that is a life saver or use this for a less complete quick reference check to see if your getting everything.

[icelandgirl]

Awww Jhern...I'm sorry you are feeling so bad.  (((((Hugs)))))

Please ask your Dr for a full thyroid panel to get a complete picture.  That includes TSH, free T4, free T3, TPOAb and TgAb...the last 2 are antibodies.  With a TSH that high, I would feel terrible...tired and achy for sure.  Most people, including me, feel best with their TSH around 1.  Some labs show an outdated range of .5-4.5.  I would bet that you would benefit from some thyroid medication.

The weight gain could be from healing and absorbing nutrients too.

I hope you get some answers and start feeling better soon!

[Jherm21]

Thanks guys! Ill defintley ask about the full thyroid panel. I did antibodies for those thyroid ones a year ago do i have to get that again.  Thanks Ennis for those recommandations I will resort back to my food diary!

[knitty kitty]

Open Original Shared Link

Here's an article that explains all the nutrients the thyroid needs to function properly and the consequences to the thyroid if there's a deficiency.  

Some thyroid problems will correct themselves if existing nutritional deficiencies are corrected.  

Check with your doctor to see if any nutritional deficiencies need to be addressed.

Hope this helps.  

[Jherm21]

ennis how do you test for Candida overgrowth did I have to see a functional doctor or do medical doctors test. It would seem like a plausible  explanation to my symptoms. 

[Ennis-TX]

They do a breath test, in some cases they can identify it in extreme cases visually if it has spread to the mouth like thrush or viewable on a scope.

[plumbago]

Hi,

I’m sorry you’re not feeling well and sympathize with the lack of answers. It’s not usually normal to have reduced WBC, no. If I had reduced WBC I would want to make sure it’s not a rheumatoid autoimmune condition, so I might get an ANA and a urinalysis.

Are you taking any medications? Do you have a rash? Family history of autoimmunity?

On the other hand, the joint pain - how active are you every day? With me, though I am older, I find that if I don’t use my muscles, I will feel pain eventually. I know we tend to report what we’ve been eating on these boards, but I also think how much we move is important.

I guess I would be most concerned about the WBC and the shortness of breath. The SOB could be anxiety, but the anxiety could be physiologically based. Or it could be something else. Is there a breakdown of your white blood cells by type?

Plumbago

[Jherm21]

Yes Plumbago, my Neutrophils are low in particular. I'm not on any medications or have a rash. No one in my family has auto immune problems except my great grandmother who had Rheumatoid arthritis so bad she had to move out west for the better weather. What does the urinalysis show? I had my ANA tested, twice (lol).  I just feel completely sick and fatigue. I cant even explain it to doctors just a general feeling of malaise. Its up and down throughout the day. My blood pressure is extremely low in the middle of the night. I almost pass out going to the bathroom every night it is like clock work. The breathing problem makes me think allergies because I have a deviated septum and have constant nasal congestion and mucus in my throat. I wish I knew exactly what was making me feel so sick. And I am at a loss for the low WBC. It didn't just show up low once but three times this past year and a half. Does anyone know about anything with High methane in the breath?

[Jherm21]

Ennis I looked up the nutritional deficiency list you posted. The only ones I was tested for was b1 (three numbers away from being out of range low), b2, b3 there was none detected in my system and I asked my doctor about this and he said its not accurate and never told me what to do about it. Vit E was fine along with magnesium but vit A was very low like one number away from deficiency. These were all checked in March so I am hoping some numbers went up, like my iron panel was severely low when first tested but has gone up to normal numbers except the ferritin. Which my doctor told me don't worry about. The other nutrients I have yet to get tested and hate that doctors only like to test for vit d ( that was insufficient last time and has gone up, from 20 to 43  and b12 which was 200 and has gone up to 400 (Ive been getting monthly injections). Which I don't think has done much of anything.

[plumbago]

36 minutes ago, Jherm21 said:

Yes Plumbago, my Neutrophils are low in particular. I'm not on any medications or have a rash. No one in my family has auto immune problems except my great grandmother who had Rheumatoid arthritis so bad she had to move out west for the better weather. What does the urinalysis show? I had my ANA tested, twice (lol).  I just feel completely sick and fatigue. I cant even explain it to doctors just a general feeling of malaise. Its up and down throughout the day. My blood pressure is extremely low in the middle of the night. I almost pass out going to the bathroom every night it is like clock work. The breathing problem makes me think allergies because I have a deviated septum and have constant nasal congestion and mucus in my throat. I wish I knew exactly what was making me feel so sick. And I am at a loss for the low WBC. It didn't just show up low once but three times this past year and a half. Does anyone know about anything with High methane in the breath?

I suggested a urinalysis to see if you had proteinuria, which is something that can happen with certain rheumatoid conditions. But you say you’ve had two ANAs - assuming those came back normal? I really like the suggestion of a food diary and going low carb, especially as raised glucose consumption can lead to a positive methane breath test. You may have a food allergy and/or are producing a lot of mucus in reaction to something, which can make breathing more difficult esp if you have a deviated septum.

I have now jacked my b12 way up and feel better, and I’m also consuming more iron-rich foods. Both of which in general help me feel less run down.

You mentioned having very low BP in the middle of the night - have you measured it? What was it, if so?
I wish I could be of more help.

Plumbago

[knitty kitty]

4 hours ago, Jherm21 said:

Ennis I looked up the nutritional deficiency list you posted. The only ones I was tested for was b1 (three numbers away from being out of range low), b2, b3 there was none detected in my system and I asked my doctor about this and he said its not accurate and never told me what to do about it. Vit E was fine along with magnesium but vit A was very low like one number away from deficiency. These were all checked in March so I am hoping some numbers went up, like my iron panel was severely low when first tested but has gone up to normal numbers except the ferritin. Which my doctor told me don't worry about. The other nutrients I have yet to get tested and hate that doctors only like to test for vit d ( that was insufficient last time and has gone up, from 20 to 43  and b12 which was 200 and has gone up to 400 (Ive been getting monthly injections). Which I don't think has done much of anything.

Did your folate (B9) levels get tested?  Folate deficiency can cause low white blood cells and anemia.  Folate is needed to work with B 12 to make both red and white blood cells. 

Here's a couple of articles.

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Hope this helps.

 

 

 

 

[cyclinglady]

Maybe you should consider a bone marrow biopsy.   Your hematologist might be on to something.  At least it would rule out several things.  Based on this link, it could be related to SIBO or another AI issue.  

Open Original Shared Link

Another possibility is Mast Cell Activation Syndrome or Mastocytosis.  That could explain the WBC, low BP, fatigue, etc.   A bone marrow biopsy is used to diagnose mastocytosis.   

https://www.celiac.com/gluten-free/blogs/entry/1931-mast-cell-activation-syndrome-madness/

Open Original Shared Link

[knitty kitty]

High methane can be related to fructose malabsorption.

[Beverage]

Ennis_TX, can you please post a link to that deficiency chart? I can't read it even when enlarged.  Thanks!

 

[knitty kitty]

Open Original Shared Link

 

This is a study done that explains the common vitamin deficiencies in newly diagnosed Celiacs.

[Beverage]

On 9/20/2017 at 9:06 PM, Jherm21 said:

ennis how do you test for Candida overgrowth did I have to see a functional doctor or do medical doctors test. It would seem like a plausible  explanation to my symptoms. 

I had the candida test done via a blood test, testing for antibodies, as it can be in many places in your body and a huge burden to the immune system.

 

[Beverage]

On 9/20/2017 at 5:07 AM, Ennis_TX said:

Did they check for candida? And what about your other levels? Keep a eye on your food diary, start rotating foods a bit more, see if you got a new intolerance. They seem to random come and go with me like REALLY random...last month was lettuce which is fine when I brought it back yesterday.  Anyway other thoughts, make sure your getting a bit of everything, I sometimes slip and do not get enough vitamin A, Vitamin K, lycopene, selenium, or zinc when I rotate nuts, seeds, and veggies sometimes reaching a combination that is lacking one mineral or vitamin.   I really do find those "Super Foods" that you need to up a bit for me it is oddly nutritional yeast, kale, cocoa nibs, coconut, pumpkin seeds seem to really boost how I feel.   Sometime a probiotic and enzymes are a huge help.

Might try a low carb (no fruit, grains, sugars, starchy veggies) for a week or two and There is this Candidia FX stuff on sale on Amazon that worked wonders for mine.

There is a app for your phone on google called deficiency finder that is a life saver or use this for a less complete quick reference check to see if your getting everything.

Ennis_TX, can you please post a link to that deficiency chart? I can't read it even when enlarged.  Thanks!

[Ennis-TX]

https://www.ahealthblog.com/wp-content/uploads/Vitamin-Deficiency-Symptoms-Chart.webp
 

 

What are you viewing this on? Looks fine on a computer screen, tablet...not so much. This is not a very comprehensive or detailed list either I really do suggest that app if you have constant issues.

[patc]

On 9/20/2017 at 5:53 AM, icelandgirl said:

Awww Jhern...I'm sorry you are feeling so bad.  (((((Hugs)))))

Please ask your Dr for a full thyroid panel to get a complete picture.  That includes TSH, free T4, free T3, TPOAb and TgAb...the last 2 are antibodies.  With a TSH that high, I would feel terrible...tired and achy for sure.  Most people, including me, feel best with their TSH around 1.  Some labs show an outdated range of .5-4.5.  I would bet that you would benefit from some thyroid medication.

The weight gain could be from healing and absorbing nutrients too.

I hope you get some answers and start feeling better soon!

 

[patc]

Just now, patc said:

 

I am 70 years, female, and was celiac diagnosed 14 yrs ago. My experience with dizzy episodes (room spins, stops, then spins the other way) was diagnosed as anxiety disorder. I am taking Effexor XR (an anti-depressant that treats anxiety and depression). It has less side effects than any of the others but once on it, it is very very difficult to come off of it...so you may be on it for life. You would need to see a psychologist or psychiatrist (both need referrals from your family dr.) in order to receive a prescription for any anxiety or depressive medicine. Having been on Effexor XR for 25 yrs at a fairly high dose I can say it works, but, would advise anyone to not go that route but instead do cognitive behaviour therapy (cbt) with a psychologist or psychiatrist and exercise a LOT (I walk 5 k per day). This exercise really really helps. Once I eliminated soy in ALL forms from my diet I felt a lot better. I wrote manufacturers of products before buying them, read all labels before buying AND ditched all the creams, shampoo, hair treatment and dyes and creams. The only soap I use for bathing, washing my hands, and shampooing my hair is Dr. Bonner's liquid or bar soap. Buy it on-line or at Choices and Health Stores. The only cream I use for my skin is coconut oil in jar cream form (Nutivina) and any Choices creams that don't have soy, soy lecithin or other weird chemicals. The only chocolate I can eat is SOME Lindt with absolutely NO fillings or flavours; Camino bittersweet chocolate chips from Choices (@ $8.50 for a small pkg!) and only 1 of Hershey's bars--Dark Chocolate. All store bought chips, popcorn, snacks, treats, candy has certain 'oils' that most Celiacs get sick from (Sunflower oil, Soy Oil, especially Canola oil, etc. etc.) The only oils I can safely eat are organic butter WITHOUT colouring ($9 per lb), pure and real Olive Oil (all store brands are filled with canola oil illegally) and pure and real coconut oil in jar cream form that I source from an online Health store. The last time I was fall down dizzy, I couldn't figure it out---then I remembered I had been to an ear specialist the month before---he had obviously used instruments that were not sterilized--he gave me an inner ear infection---the only cure as to wait it out....

Hopefully, my comments are useful to you.  Pat

[Posterboy]

Jherm21,

A methane breathe test is usually an indication of SIBO.

I am surprised Feeneyja has not commented on this thread.

see this thread where SIBO is discussed in detail.

https://www.celiac.com/forums/topic/118308-positive-dgp-not-celiac/?tab=comments#comment-976164

Here is the link about the importance of methane test in a SIBO diagnosis.

Open Original Shared Link

Jherm21 you might also check out this thread that talks about how Iron Deficiency Anemia and H. Pyloria infections can be a sign of low stomach acid.

https://www.celiac.com/forums/topic/119240-diagnosed-with-ttg-iga-level-of-128-three-days-ago-trying-to-conceive-or-should-i-hold-off/?tab=comments#comment-981475

You should also consider taking a good B-Complex like B-50 or B-100 B Vitamins are known to be helpful for Celiacs'.

Here is the research as reviewed on celiac.com

https://www.celiac.com/articles/21763/1/Do-Vitamin-Supplements-Benefit-Celiac-Patients/Page1.html

note this was not a b-complex with all the b-vitamins in them just one's that help with homoeycsteine.

B-Vitamins because they are water soluble should be taken 2/daily or with each meal for best results.

Take some Magnesium Citrate or Magnesium Glycinate the same way for energy to help with your fatigue symptom's.

I think if you start both the B-complex 3/day and the Magnesium Glycinate 3/day you will be surprised how much better you feel in 3 or 4 months.

Also check out this lady's story of how she used High dose Vitamin D to raise her WBC levels.

Open Original Shared Link

I have only scanned it but it came up high in the search results for reasons for low WBC levels and Vitamins but I know Knitty Kitty swears by Vitamin D and I recently was tested low in it so it much more common than doctor's realize. I think knitty kitty says she feels much better when her Vitamin D levels or 80 or above.  (I know you tested for it in your result's) but sometime many of us as celiac's do better with higher ranges than the normal person.

***** this in not medical advice but I hope it is helpful.

posterboy,

 

 

[tessa25]

I've been on a mostly liquid diet for the past two years as that is the only thing that gets my celiac numbers to go down. My only deficiency was WBC (neutrophils). I ate alot of meat for a month and rechecked WBC at the same lab. Normal levels now. So eating alot of meat did it for me. My celiac numbers went up as expected.  Back on the liquid diet.