DR thinks Celiac

[GreenTurtle]

I'm seeing a GI doctor August 1st. 

My Primary doctor thinks its Celiacs but has only done some tests, saying the GI doctor needs to do the rest of the testing for it as shes not capable. I really don't know what to think - she said shes sure its not Rheumatoid arthritis because of the tests she did. If anyone can contribute anything of any kind that would be awesome, its been slow and a long wait to get to a GI doctor and i'm just full of " I don't knows"

 

H pylori breath test - Negative

ANA w/reflex - Negative

C-reactive protein - 15.1 ( top end of the gray area on the slide scale)

Anti-CCP - 0.5

TPO Antibody - 6.01 (positive)

Thyroglobulin antibody -1.18

Free Thyroxine - 1.03

TSH - 3.1

Rheumatoid factor - IGG <5 / IGA <5 / IGM <5 

I was diagnosed finally recently with iron deficiency with an iron level of 17, they are currently giving me iron venofer infusions because taking prescription pills and eating foods with iron has not helped raise my levels for over 4 months, in fact they dropped. The Hematologist is saying some kind of absorption issues but has done no other tests.

I have not gone off any kind of gluten as of yet because of still waiting to see the GI doctor in August, figured it was best not to change my current diet till more is tested / found out even tho it sucks. 

My Current issues list would be:

Inflamed eyes, sinuses, ear canals, some days worse than others.

Constant terrible gas for years ( much worse than just normal farts )

Constant bloating that worsens when I eat any food, I look pregnant by the end of the day and have trouble sleeping because my stomach / gut is so uncomfortable. 

Diarrhea - all day every day, never a break. Some days are much worse than other days. Because of this I have trouble staying hydrated.

Crazy weight gain that I cannot get rid of, its VERY slow to come off when I try but packs on very easily.

Low iron ALLLLL the time regardless of food eaten or pills taken.

hypothyroid issue randomly 4 years ago which magically went away according to the doctor I had seen, after some synthroid for a couple of months.

Constantly soul crushingly tired, achey, really dark circles under eyes, skin issues with redness and bumps. Basically too many to list lol

Anyone with thoughts or commiserations, tips, suggestions? even if its not celiacs maybe someone can direct me to something of some sort. Thanks everyone. 

 

 

 

[tessa25]

Make sure the gastro orders the full celiac panel so you can get answers sooner rather than later. The full celiac panel includes:

TTG IGA
TTG IGG
DGP IGA
DGP IGG
EMA
IGA

You have to be keep eating gluten daily before the blood test. A positive on any one blood test should lead to your gastroenterologist doing an endoscopy /biopsies to confirm a celiac diagnosis.

 

[GreenTurtle]

I saw the GI doctor today, I’m booked for colonoscopy and endoscopy. The dr did celiac blood test of

TTG Ab, IgA.

IgA serum. 

 

Im not sure why they didn’t do all the ones listed above?

 

He also gave me a no dairy of any kind diet and lowfoodmap diet. My issue with this is that I’m already non dairy have been for years, I just don’t like it. And the lowfoodmap I pretty much already follow this diet as well with the exception of breads and pasta of all kinds and steel cut oats every now and then. So if I’m cutting out the breads and pastas won’t that just directly say my issue is with gluten? 

[tessa25]

The endoscopy/biopsies should give you answers. You have to keep eating gluten until all celiac testing is done.

[cyclinglady]

The TTG IgA and the Immunoglobulin A is most often ordered  as it catches almost all celiacs.  There some who are Immunoglobulin A (IgA) deficient.  A very low result could impact your TTG IgA tests.   If the TTG IgA test is negative, you should ask for the rest of the panel, but you are getting an endoscopy and he is checking for celiac disease.  You are ahead in the diagnostic game!  

Did anyone address your thyroid antibodies?  You said that your hypothyroidism went away.  If you have elevated antibodies, you could have autoimmune thyroiditis.  That can cause so many things like hives!  I struggled with those for six months last year.  I have Hashimoto’s Thyroiditis.  My thyroid antibodies are often elevated, yet with hormone replacement, my thyroid Panel (e.g TSH) is stable.  It can also wack out too.  

I do not know about going on a FODMAP diet yet.  At least do not give up wheat, barley or rye which is a FODMAP food.   You need that daily in your system until those biopsies are obtained.  Otherwise, you could mess up your diagnosis and be in diagnostic  limboland for a long time!  

Open Original Shared Link

[GreenTurtle]

19 hours ago, cyclinglady said:

The TTG IgA and the Immunoglobulin A is most often ordered  as it catches almost all celiacs.  There some who are Immunoglobulin A (IgA) deficient.  A very low result could impact your TTG IgA tests.   If the TTG IgA test is negative, you should ask for the rest of the panel, but you are getting an endoscopy and he is checking for celiac disease.  You are ahead in the diagnostic game!  

Did anyone address your thyroid antibodies?  You said that your hypothyroidism went away.  If you have elevated antibodies, you could have autoimmune thyroiditis.  That can cause so many things like hives!  I struggled with those for six months last year.  I have Hashimoto’s Thyroiditis.  My thyroid antibodies are often elevated, yet with hormone replacement, my thyroid Panel (e.g TSH) is stable.  It can also wack out too.  

I do not know about going on a FODMAP diet yet.  At least do not give up wheat, barley or rye which is a FODMAP food.   You need that daily in your system until those biopsies are obtained.  Otherwise, you could mess up your diagnosis and be in diagnostic  limboland for a long time!  

Open Original Shared Link

Thank you for explaining the testing. The doctors eyes lit up like a christmas tree when I was explaining everything to him and how long its been going on PLUS the Iron deficiency it was like he couldn't wait to order the Scopes lol.

The nurse at my GI appointment who did my intake mentioned that after all my GI stuff is done I should have my PCM send me to an endocrinologist to check into the thyroid stuff. I mentioned it to the GI doctor asking if clearing up the GI issue might help clear up the TPOA test, he had no idea. So for now i'm going to try and get all the GI stuff done and then ask my PCM for a referral about the thyroid stuff.  I had been told a few years ago that I was hypothyroid ( almost 5 tsh level, terribly ill ) and put on synthroid the lowest dose for a couple of months and went back for testing. The doctor I saw then told me that I could stop taking them as my levels were normal and " he couldn't find on his phone app how to prescribe a new dose for me, so just stop taking them" I was horrified to say the least. I went back in about 2 months after stopping synthroid and was tested and normal levels. I have had normal levels since then up till recently and its a bit high plus the tpoa came back positive this time as well. So all that is strange to me, it almost seems in coloration to the current issues I have. I stopped eating breads, pastas etc when I was told I was hypothyroid and didn't eat any for a few years maintaining proper levels and feeling great and inevitably started up breads and such again after a move across the country and being lazy about groceries and cooking, and now its to this point again. Maybe i'm just reaching though.

I am going to keep eating all the bread and pasta etc until the biopsies are done, thats not something I want to risk messing up, the GI doctor and the woman who booked my appointments for the endo and colon scopes had both said I could start the diets now and it didn't matter if I wasn't eating possible trigger foods. I'm so tired of waiting for all these appointments and things it took FOREVER just to get into the GI office. I was considering paying out of pocket for testing on other food sensitivity from one of those send away test kits, see if I can pinpoint inflammation causing foods for me since mine seems to be so high. 

 

I am seeing Doctor German Oliver, with Texas Digestive Disease Consultants. In case anyone is curious.

21 hours ago, tessa25 said:

The endoscopy/biopsies should give you answers. You have to keep eating gluten until all celiac testing is done.

Eat all the bread!!!

[cyclinglady]

Save your money on food intolerance testing.  Read this article that was just released from the University of Chicago:

Open Original Shared Link

Instead keep a food journal.  Many celiacs are often temporarily lactose intolerant (unless you have the genetic tendency), so you could give up for now.  

KEEP eating gluten until all testing is complete.  In as little as two weeks, healing can occur.  For most, healing takes a long time. Where do you fit on the healing curve?  Who knows?  Best to err on the side of caution and listen to the top leading celiac experts (and not knowing when the appointment is).  

 

 

[Posterboy]

On 7/25/2018 at 1:39 PM, GreenTurtle said:

Low iron ALLLLL the time regardless of food eaten or pills taken.

Green Turtle,

Try treating/testing your stomach acid levels.

Here is a good topic thread about it where someone had severe bloat and taking BetaineHCL helped them.

Read all the links when you get a chance.

Also here is a thread that talks about Iron Deficiency Anemia (IDA).

Here is the new original research entitled "Is achlorhydria a cause of iron deficiency anemia?" and the answer was Yes!

Open Original Shared Link

treat your low stomach acid (really NO stomach acid) and your Iron Deficient Anemia should get better.

We know this because research confirms this.

See this research entitled "Iron-deficiency anemia caused by a proton pump inhibitor."

(in case you are taking a PPI) you will need to cycle off it (if you can) if you want your Iron levels to improve.

Open Original Shared Link

And what is unique about this research we see the difference between hypochlorhydria (Low) and Achlorhydria (NO stomach acid).

quoting the abstract my words for clarity in ( )

Abstract

"A 59-year-old man was orally administered rabeprazole, a proton pump inhibitor (PPI), for gastroesophageal reflux disease, after which he gradually developed iron-deficiency anemia. The anemia did not improve following the administration of ferrous fumarate, and endoscopic screening of the entire gastrointestinal tract, including the small intestine, did not reveal any findings indicating the cause of the anemia. (Note:) The patient was then switched from rabeprazole (PPI) to famotidine (H2 inhibitor) and the anemia was cured within three months. There is much debate as to whether the long-term use of PPIs causes iron-deficiency. However, this case strongly suggests that PPIs can induce iron-deficiency anemia."

So low stomach for H2 inhibitor brought about by some blockage of stomach acid won't cause IDA but PPIs that block nearly 80 % of stomach acid production leads to IDA.

Now you don't need to be taking PPI's to develop low stomach and the subsequent IDA.

Stress will do the same thing too us.

Stress is said "Kill us" right.

Well it "Maims us first".  And why we develop first heartburn (GERD), IBS, and possibly even NCGS etc. when we get low in stomach acid. 

Lucky for us prousky has studied the cause and effect of how having  low Vitamin status can affect our stomach acid levels.

Here is the full citation entitled "Is Vitamin B3 Dependency a Causal Factor in the Development of Hypochlorhydria and Achlorhydria"

Open Original Shared Link

quoting his citation and why stress maims us. . . and the difference between a vitamin dependence (subclinical levels) and a Vitamin Deficiency  of Niacin(amide)  (I have put my words in ( ) for clarity and ease of reading)

quoting "Vitamin B3 Deficiency and Vitamin B3 Dependency"

. . . . "A vitamin B3 deficiency occurs when the minimal amounts of the vitamin are not obtained due to an inadequate diet.  . .. . By contrast, a vitamin B3 dependency denotes an increased metabolic need (STRESS) for the vitamin. . . .The cause of a vitamin B3 dependency probably stems from long-term environmental-genetic stresses that impair biochemical processes dependent upon a constant supply of the vitamin. . . ."

Long story short when we are stressed we need more Vitamins when we are (More) stressed!

And this is usually not a probably for fat soluble vitamins but for water soluble B-Vitamins like B1, B2, B6, B12, Folic Acid and yes B3 it is critical we supplement to make up for this increase biologic need.

This is only for a cycle of time . .for most people this is 3 to 4 months 2 or 3 (ie. with meals or morning and evening) times daily (depending) which ever is easiest to do for you.

I had a friend like yourself.  His was needing infusions and has at times past needed transfusions as well.

No her Iron levels are improving.  It took about 6 months for her to see improvement.

But she no longer needs pints of blood every 3 or 4 months.

There is hope you can get better when you know what is wrong.

It is not a long way back . . . .if you know the way.

I hope this is helpful but this is not medical advise.

Also have your doctor check your Vitamin D levels.

see this thread on Vitamin D levels and its' association with Thyroid problems.

Open Original Shared Link

And see this livestrong article how your 5x more like to have Iron deficiency anemia when you are low in Vitamin D.

Open Original Shared Link

it is because we get low in several vitamins when our stomach acid is too low or even termed as NO (Not enough) stomach to absorb Iron we get IDA from a pH so low as low to be termed achloryhdria or NO stomach acid which we now know is an independent cause of IDA.

Try taking some Magnesium Citrate or Magnesium Glycinate with your meals for energy and help fatigue.

Chalie horse (cramps) are a common symptom of Low magnesium which also get's low with low/or NO stomach acid especially.

You can test this by trying some baking soda to see if you burp within 5 minutes.

read this link to do some home testing to see if this is true for you

Open Original Shared Link

It was true for brandi1969 from this thread about intense bloating.

I must stop for now it is getting a little too long as usual but I do hope it is helpful.

Again I hope this is helpful but it is not medical advice I just found it was true in my case when I developed low stomach acid and became low in Vitamin D, Magnesium and many of my B-Vitamins (if not all of them).

As always,  2 Timothy 2:7 Consider what I say; and the Lord give thee understanding in all things.

Posterboy by the Grace of God,

 

[GreenTurtle]

I haven’t heard anything from the GI doctor office as of yet but I called this morning and left a message asking if my test results are in yet and also to inform them the insurance request is “incomplete” in case they weren’t aware of that.

 

Im fairly sure I don’t have low stomach acid, don’t have any heart burn or gerd or anything symptom wise for that. My blood tests also don’t show any markers for it according to my regular doctor. 

 

My last iron infusion is this week but i’ve been feeling terrible this past weekend, feels like back to square one. The nurse said it can sometimes take till after the last one to work, I guess will see. Blood test to check that it worked and is staying up isn’t till September. 

So much hurry up and wait!!

[cyclinglady]

Hang in there!  

[GreenTurtle]

Okay so, update the best I can.

Basically I got the blood test results back and they wouldn’t give me the actual numbers but said that it was negative.

I went for the endo scope and colon scope a couple days ago. And I was prescribed Pantoprazole for colon ulcers. They also said I had inflammation in my esophagus, stomach and intestine with loss of folds. They took 5 biopsy’s for testing but now also want more blood tests and a fecal test. 

I haven’t heard back from the doctors office about the blood tests I need to do or the fecal, so I called and left messages today. Still no real answers yet... and the Dr didn’t say if any of this would be causing my iron absorption issues. 

[cyclinglady]

Thanks for the update.   Remember, you are the customer.  You should be given copies of all your lab tests each and every time or they should be loaded into your patient portal if you live in the US.  

Also, I think you just had the TTG IgA test.  I never had a positive on the TTG or EMA.  Just the DGP IgA and I am biopsy confirmed.  Why?    No one knows except it is more common in toddlers but I am NOT a toddler!  

[GreenTurtle]

 

50 minutes ago, cyclinglady said:

Thanks for the update.   Remember, you are the customer.  You should be given copies of all your lab tests each and every time or they should be loaded into your patient portal if you live in the US.  

Also, I think you just had the TTG IgA test.  I never had a positive on the TTG or EMA.  Just the DGP IgA and I am biopsy confirmed.  Why?    No one knows except it is more common in toddlers but I am NOT a toddler!  

 

I have a patient portal for every other doctor I’ve been to and I clearly remember signing up for one but never being emailed anything for a portal link or log in etc. I am in Texas and I was wondering why I never got anything honestly.

The office is kind of difficult to deal with! when the MA calls me back I’m going to ask for a copy of he first blood tests and try to pick them up whenever I get the request for the other tests in... it usually seems to be a long phone tag game with them because they never pick up when you call lol

I was able to get a follow up appointment booked but not till October 17th at 430pm! The booking operator seemed confused as to why I wasn’t called by the MA yet because they call 2 days after the procedures she said and I should have already been for blood tests and picked up the other stuff from the lab out by them. I don’t know ? I may be more confused now than before haha. 

 

[GreenTurtle]

I don’t really understand how this is possible.. I finally spoke to the MA and the doctor reviewed my 5 biopsy before he left for vacation and even tho I have inflammation the whole way through with loss of folds in the colon the MA said all 5 biopsy’s are “negative for everything including cancer” I have nothing yet my entire digestive tract is inflamed and missing colon folds yet I have “nothing” ??? 

Is it possible to have gluten/ celiac issues and have negative biopsy and blood test?

Im still waiting on the other blood tests to happen and the fecal test... im soooo confused now and I’m getting sores that open up all over my arms and face not just my scalp since I increased breads/ pastas etc. My skin is a total mess and im oily as hell, terrible pimples! Tired of feeling terrible and being a slave to the toilet, can’t even go out and enjoy a meal for my anniversary for fear of pooping myself in the car on the way home.. ugh.

 

[cyclinglady]

I am so sorry.  Please get copies of all your lab tests, GI’s report and the pathologist’s report.  It might be time to get a second opinion and you will want everything in hand during the consultation.  You need to know where the biopsies were taken, and did the pathogist even look for celiac disease?  How many were taken in the stomach, small intestine and large intestine (colon).  Something seems off.  Again, it might not be celiac disease, but you should determine the source of your problems.