positive blood tests, negative biopsies. what’s going on??

[amanda04]

hello, im new here but have been lurking for some time trying to find guidance or answers. when i was around 12, after experiencing the pretty common celiac symptoms, my blood work came back and i was positive for celiac. i don’t know the specifics but the antibodies weren’t very high, though still elevated. i went gluten free as my doctor at the time said an endoscopy was too invasive wouldn’t be necessary. i was still feeling awful so we eventually got a biopsy done through another doctor but the results came back negative. i eventually started eating gluten again, which led me to where i’m at now. i was pretty asymptomatic for the years following up until last year, and i’m 19 now. i got bloodwork again and the results came back even more positive than the original time i got it done, if that makes sense. i got an endoscopy again while eating gluten, and the biopsy came back negative again. i have another autoimmune disease (graves’), so even if i didn’t have celiac, im staying away from gluten as i’ve read it can make autoimmune conditions worse. however, i still feel awful while being gluten free for almost two months now, almost worse. i’ve had migraines everyday, im super bloated, struggling to eat due to pain and nausea, im constantly having to go to the bathroom and my stool has been really weird colors (green, black, and pale), my joints are aching so badly, im fatigued and my memory isn’t very good, depression and anxiety has gotten worse, all of it but so much worse than it’s been before. i don’t have an appointment with my primary care provider until the 17th of this month, and i got my endoscopy on the 18th of may. i don’t know what to do, and i’m worried i may be developing more autoimmune conditions due to the 6 years i was on gluten again after my original ‘diagnosis’ and that they are rampant within my family. i just want to feel healthy!! 

[GFreeIowaMom]

3 hours ago, amanda04 said:

hello, im new here but have been lurking for some time trying to find guidance or answers. when i was around 12, after experiencing the pretty common celiac symptoms, my blood work came back and i was positive for celiac. i don’t know the specifics but the antibodies weren’t very high, though still elevated. i went gluten free as my doctor at the time said an endoscopy was too invasive wouldn’t be necessary. i was still feeling awful so we eventually got a biopsy done through another doctor but the results came back negative. i eventually started eating gluten again, which led me to where i’m at now. i was pretty asymptomatic for the years following up until last year, and i’m 19 now. i got bloodwork again and the results came back even more positive than the original time i got it done, if that makes sense. i got an endoscopy again while eating gluten, and the biopsy came back negative again. i have another autoimmune disease (graves’), so even if i didn’t have celiac, im staying away from gluten as i’ve read it can make autoimmune conditions worse. however, i still feel awful while being gluten free for almost two months now, almost worse. i’ve had migraines everyday, im super bloated, struggling to eat due to pain and nausea, im constantly having to go to the bathroom and my stool has been really weird colors (green, black, and pale), my joints are aching so badly, im fatigued and my memory isn’t very good, depression and anxiety has gotten worse, all of it but so much worse than it’s been before. i don’t have an appointment with my primary care provider until the 17th of this month, and i got my endoscopy on the 18th of may. i don’t know what to do, and i’m worried i may be developing more autoimmune conditions due to the 6 years i was on gluten again after my original ‘diagnosis’ and that they are rampant within my family. i just want to feel healthy!! 

I think right off the bat, before anyone offers advice it would be helpful to know what exactly you have been eating since going gluten free just so you don't get a string of unhelpful diet suggestions. When I first got sick, I did a round of dicyclomine because my doctor thought it was just IBS. I think that it was more helpful than I gave it credit for during my transition to gluten free foods. After about 2 weeks of eating gluten-free I didn't need it anymore. I didn't have headaches and nausea after going gluten free, because I had barely eaten anything for 8 weeks by the time I tried it, but you could very likely be experiencing a detox like reaction. I recently cut out dairy due to poor lymphatic movement and I had acne, sinus pain, nausea, headaches, fatigue - the whole thing. It is still working itself out as I experience a new wave of it every few days - decreasing in severity each time. I am not a doctor, but I would keep a stool journal just in case - it seems like it may be important to me. Don't over hydrate, maybe try a very low Epsom salt bath, and  some of an electrolyte drink every few hours (if you can tolerate it) for your headaches.

[Wheatwacked]

Welcome to the forum Amanda04.

3 hours ago, amanda04 said:

i just want to feel healthy!! 

So say we all!

First I'll raise the specter of cross contamination. Are you living in a gluten free environment? Eating out? Personal care products? Processed gluten free foods (call them gluten facsime foods) sometimes have ingredients that many posters on this forum find irritating.

While the endoscopy/biopsy Marsh 3 villi damage is the Gold Standard for diagnosing Celiac Disease, not finding damage does not mean you do not have  Celiac.  Though originally Celiac Disease was considered only gastrointestinal, there are over 200 other symptoms that have been linked to it.  The Gluten connection was only discovered in the 1950's. Until then it was also called Infantilism. 

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"Celiac disease is probably the most troublesome disturbance of nutrition of late infancy and early childhood. The consensus of opinion is that it is a functional disease characterized by inability to utilize properly carbohydrates and fats. To what extent the carbohydrate or the fat is at fault is not quite so clear. Herter, who studied these cases from a laboratory standpoint probably more carefully than any one else, found intolerance of carbohydrates to be the most important feature, resulting in the deprivation of the organism of the foodstuff on which it mainly depends for its caloric needs, and stated that: "In the severest forms of 'Infantilism' the total quantity of carbohydrates which can be tolerated may be very small, and it may be possible to supply in this form less than one-fifth of the calories required by the organism instead of nearly one-half as in health. The fats are, on the whole, better tolerated than the carbohydrates." THE VALUE OF THE BANANA IN THE TREATMENT OF CELIAC DISEASE

 

     Given the current recommendations to get 45% to 65% of our daily calories from carbohydrates, you can see how this conflicts.

     Next, Celiac Disease is a disease of malabsorption of some 20 vitamins and minerals that we absorb though the small intestine. Our MAD (Modern American Diet) or SAD (Standard American Diet) is inherently deficient in several nutrients. That is why in the US most foods made with grains are fortified.

     When you stop eating fortified foods you must replace those lost essential vitamins and minerals from other, "healthier" sources.

     Until 1950 or so when Eskimos began adopting the western diet, metabolic disorders like diabetes and heart attacks were vitrually unheard of.

Quote

The Eskimo diet and its effect on the heart has been a source of confusion and contention for decades. Their low rates of heart disease while traditionally consuming lots of saturated fat and few carbohydrates appeared to contradict the orthodox view that saturated fat was a major cause of heart disease. More recently, reports suggested that Eskimos did not actually have low rates of heart disease, thus confounding a newer emerging view that favors fats, including saturated fats, over carbohydrates.   Changes in Eskimo Diet Linked to Increase in CHD

     Number one on your list should be Choline and folate.  Folic Acid is added to fortified foods to compensate for the folate lost in milling.  As an aside, folic acid; but not folate from food; has been linked in several controlled studies to increase cancer by as much as 17% over the control group. 

     Folate and Choline are two of the three paths (B6 is the third) used to recycle homocysteine to methionine.  Homocysteine is the product of amino acid metabolism.  When folate intake is low, choline picks up the slack. But on the MAD diet, only around 10% of us get the minimum amount of choline (liver, eggs, beef steaks) for fear of cholesterol.  Homocysteine is an independent indicator of inflammation. So no folic acid, more inflammation, more pain.  I will point out that here also that the MAD diet has about a 20:1 ratio of Omega 6 to Omega 3 fatty acids.  Optimum for us humans is 1:1.  Omega 6 is generally inflammatory, omega 3 is healing.  Hence the interest in fish oil type supplements.

Choline is an essential ingredrient of bile, needed to process fats through the liver.  Less folate puts more need of choline to control homocysteine leaving you deficient of choline to process fats. 

4 hours ago, amanda04 said:

struggling to eat due to pain and nausea, im constantly having to go to the bathroom and my stool has been really weird colors (green, black, and pale)

Stinky too, I suspect.

Number two of your symptoms is Graves Disease.  41% of Americans suffer from low vitamin D.  The farther north, the more likely. 51% Irish, one article mentioned up to 70% Canadians.  Vitamin D is the most important in controlling the autoimmune effect.  Blood plasma 25 Hydroxy 25 vitamin D in healthy people getting plenty of sun stabilizes at around 80 ng/ml (or 200 nmol/L depending on the format the lab uses to measure).  Salmon, by the way, has lots of vitamin D.  Wild-caught salmon provides nearly 1,000 IU of vitamin D.

So in addition to low D allowing the immune system to run amuck and attack our own bodies, low intake of iodine can cause the thyroid to overwork trying to scavange every bit of iodine for our needs.  The American intake of iodine, since the discovery that it is effective against radiation poisoning (The Wolff-Chaikoff Effect) has decreased 50% from 1970 until today.  Thyroid Diseases have increased and cancer rates have doubled.

Quote

More than 12 percent of the U.S. population will experience a thyroid condition at some point in their lives, according to the American Thyroid Association (ATA). One in eight women will also develop a thyroid disorder during their lifetime. In fact, women are five to eight times more likely than men to have thyroid problems, especially following pregnancy and menopause  Understanding Thyroid Problems & Disease

I imagine your lack of weight gain and energy issues were central to the Graves Disease diagnosis.  Since classmates and others were doing ok, it is not unreasonable to suspect that uncorrected Celiac Disease malabsorption syndrome might have been the root cause.

[trents]

Welcome to the forum, Amanda!

Do you have access to the antibody testing results done most recently that you say were more strongly positive than the first ones done? It would be helpful to know exactly what antibody tests were run because some of them are more specific for celiac disease than others.

We do now and then get reports from forum participants who, like you, have positive antibody tests but negative biopsies and most of them are with young people. This can be due to several factors which I won't go into here.

Are you still consuming oats and dairy? A certain percentage of celiacs react to the proteins in these foods like they do to gluten because the protein structures are similar to that of gluten. It is very common for celiacs to develop intolerance to other, non-gluten foods over time and it can be almost anything. It might be helpful to keep a food diary to see if you can spot any patterns.

[Wheatwacked]

1 hour ago, GFreeIowaMom said:

some of an electrolyte drink every few hours (if you can tolerate it) for your headaches.

Surprisingly Red Bull has no exotic ingredients and no High Fructose Corn Syrup which has to be processed first by the liver before it is available. It has sugar, glucose, Taurine (an essential antioxident amino acid), magnesium, B3, B5, B6, and B12. And about a cup of coffee worth of caffeine. All essential to the Krebs Cycle (the creation of ATP energy in mitochondria). 

My experience with diabetes has found Taurine to be especially effective in using glucose.  Given my measured fasting baseline of 170 mg/dl (normal is less then 100) I drank 30 ounces of RB. An hour later my glucose was 224 mg/dl, expected because that was about 12 teaspoons of sugar.  The surprise was an hour later my glucose was down to 109, the lowest I'd since in two years.  The Taurine was the new ingredient to me.  So I now take in addition to 10,000 IU of vitamin D, 500 mg of B's 1,3 and 5, 1000 mcg of B12, and 500 mg of Choline daily, I take 1000 mg of Taurine.  I eat mostly garden salads with proteins like salmon, ground beef and eggs. Significant energy increase and almost no gut problems other than my anorexia, which is definitely stress related.  It seems that under stress I prefer cigarettes and coffee to food.  Something I am working on.

[Scott Adams]

Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months.

Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal.

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